CARING FOR THE
Vulnerable
MARY DE CHESNAY, PHD, RN, PMHCNS-BC, FAAN
Retired Professor, WellStar School of Nursing, Kennesaw State University, Kennesaw, Georgia
BARBARA A. ANDERSON, DRPH, RN, CNM, FACNM, FAAN
Professor Emerita, Frontier Nursing University, Hyden, Kentucky
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Names: De Chesnay, Mary, author. | Anderson, Barbara A., 1948- author.
Title: Caring for the vulnerable : perspectives in nursing theory, practice,
and research / Mary de Chesnay, Barbara A. Anderson.
Description: Fifth edition. | Burlington, Massachusetts : Jones & Bartlett
Learning, [2020] | Includes bibliographical references and index.
Identifiers: LCCN 2018036792 | ISBN 9781284146813 (paperback)
Subjects: LCSH: Nursing--Social aspects. | Transcultural nursing. |
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23 22 21 20 19 10 9 8 7 6 5 4 3 2 1
To Donna Chambers, APRN, an exemplary nurse
whose commitment to the vulnerable people she
cares for and about is an inspiration.
–MdC
To my daughter, Laura, whose life has been
characterized by caring for vulnerable youth, and to
my son, Rob, who has alleviated the vulnerability of
blindness by his superb technical skills.
–BA
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Contents
Preface
Foreword
Acknowledgments
About the Editors
Afterword
Contributors
UNIT I
viii
ix
x
xi
xii
xiii
Concepts and Theories
1
Chapter 1
Vulnerable Populations: Vulnerable People . . . . . . . . . . .3
Chapter 2
Advocacy Role of Providers . . . . . . . . . . . . . . . . . . . . . . . .17
Chapter 3
Intersection of Racial Disparities and Privilege
in Women’s Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29
Mary de Chesnay
Mary de Chesnay and Vanessa Robinson-Dooley
Jessica Ellis
Chapter 4
Social Justice in Nursing: A Review of the
Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .39
Doris M. Boutain
Chapter 5
Health Literacy: Through the Lens of One Provider . . . .55
Chapter 6
Bullying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .63
Chapter 7
Applying Middle-Range Concepts and Theories
to the Care of Vulnerable Populations . . . . . . . . . . . . . . .71
Pamela H. Ograbisz
Pamela J. Evans and Mary de Chesnay
Nicole Mareno
iv
Contents
Chapter 8
v
Resilience in Health Care and Relevance to
Successful Rehabilitation Among Registered
Nurses with Substance Use Disorders . . . . . . . . . . . . . . 91
Sara Rowan and Jason Smith
Chapter 9
Afghan Women Refugees: Application
of Intersectionality Feminist Theory . . . . . . . . . . . . . . . 97
Brenda Brown
UNIT II
Chapter 10
A Holistic Approach to Women’s Employment . . . . . . 111
Research
123
Chapter 11
The Boys on the Porch: Life Among Previously
Homeless Men . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125
Christie Emerson
Rosemary Donley
Chapter 12
Validation of Fluid Intake Tracking System
Designed for Heart Failure Patients . . . . . . . . . . . . . . . 135
Kelly Dunn
Chapter 13
A Systematic Review of Cardiomyopathy and
Peripartum Mortality in the United States . . . . . . . . . 151
Andrew Youmans
Chapter 14
Life Beyond Movement: A Life History of
a Male Quadriplegic . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161
Amanda P. Knowles, Anny Sosebee, and Edwige Goby Konwo Tayo
Chapter 15
Overcoming Breastfeeding Challenges:
A Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
Lauren Sillery Oberg
Chapter 16
Adult Family Relationships After Childhood
Maltreatment and Parental Substance Use or
Mental Disorder: Pursuing an Ethics of Care . . . . . . . . 187
Elise J. Matthews
Chapter 17
HIV Prevention Education . . . . . . . . . . . . . . . . . . . . . . . 197
Alexander Giles
vi
Contents
UNIT III
Practice and Programs
209
Chapter 18
Obstetric Fistula: The Cost to Child Brides . . . . . . . . . . 211
Chapter 19
Caring for the Transgender Community . . . . . . . . . . . . 219
Chapter 20
Developing Population-Based Programs for
the Vulnerable. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229
Jessica Ellis, Laura Elledge, and Mary de Chesnay
Amy P. Roach
Anne Watson Bongiorno and Mary de Chesnay
Chapter 21
The Hepatitis C Epidemic: Outreach and
Intervention for Boomers . . . . . . . . . . . . . . . . . . . . . . . 239
Gregory Grevera and Karen Hande
Chapter 22
Trauma-Informed Primary Care: Promoting Change
Among Patients with Early Life Adversity . . . . . . . . . . 247
Tracey Wiese
Chapter 23
Opioid Abuse and Diversion Prevention
in Rural Eastern Kentucky . . . . . . . . . . . . . . . . . . . . . . . 257
Tricia Flake
Chapter 24
Culturally Contextualized Community Outreach
Program to Promote Breastfeeding Among
African American Women . . . . . . . . . . . . . . . . . . . . . . . 267
Rachel Simmons
Chapter 25
Strangulation Related to Intimate Partner
Violence: Caring for Vulnerable Women in the
Emergency Department . . . . . . . . . . . . . . . . . . . . . . . . 277
Jeanne Parrish
Chapter 26
The Effects of Gun Trauma on Rural Montana
Healthcare Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . 291
Margaret Anne Bortko
UNIT IV
Teaching and Learning
303
Chapter 27
Teaching Nurses About Vulnerable Populations . . . . . 305
Chapter 28
Caring for Vulnerable Populations: Outcomes
with the DNP-Prepared Nurse . . . . . . . . . . . . . . . . . . . . 315
Mary de Chesnay
Barbara A. Anderson and Gwendolyn Short
Contents
Chapter 29
vii
Vulnerability and Resilience: Teaching Students
in Low-Resource and Culturally Unfamiliar Settings . . . 325
Barbara A. Anderson and Jennifer Foster
Chapter 30
Health Care in Mexico . . . . . . . . . . . . . . . . . . . . . . . . . . 333
Chapter 31
Honors Capstone: Preparing Grant Content for
The Hope Box . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 341
Camille Payne and Genie E. Dorman
Elizabeth G. Giganti
Commentary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 350
Mary de Chesnay
UNIT V
Policy
351
Chapter 32
Public Policy and Vulnerable Populations . . . . . . . . . . 353
Chapter 33
Facing the Nursing Workforce Shortage: Policies and
Initiatives to Promote a Resilient Healthcare System . . . . 363
Jeri A. Milstead
Barbara A. Anderson
Chapter 34
The Implementation of the Strong Start for Mothers
and Newborns Initiative in Freestanding Birth Centers . . . 373
Jill Alliman and Susan Rutledge Stapleton
Chapter 35
Protecting Vulnerable Populations from MosquitoBorne Diseases: The Cases of Yellow Fever and Zika . . . . 387
Pauline Herold Tither
Chapter 36
The Link Between Animal Abuse and
Interpersonal Violence . . . . . . . . . . . . . . . . . . . . . . . . . . 403
Kathryn Bruno
Commentary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 426
Mary de Chesnay
Chapter 37
Long After Allende and Pinochet: Uncovering
Vulnerability in Political History—Method
and Agency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 427
Ricardo A. Ayala, Markus Thulin, and Rocio Elizabeth Núñez
Chapter 38
Index
Aging in Place Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . 443
Diane L. Keen
453
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Preface
F
or the Fifth Edition, we have retained material from previous editions that we consider basic,
such as definitions, cultural competence, social justice, and health literacy. We have updated
chapters on basic concepts and theories, programs, teaching and learning, and health policy.
Based on feedback from faculty who use the book, we understand that the book is now used extensively in DNP programs, so we have recruited more authors from such programs and included case
studies relevant to advanced practice nursing and administration for appropriate chapters. The new
instructor guide includes material for all levels because the course is still offered for undergraduates.
viii
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Foreword
Cheryl Tatano Beck, DNSc, CNM, FAAN
This is a landmark book that should be read around the world. For far too long, vulnerable populations across the globe have not received the attention that they so sorely need. Mary de Chesnay
and Barbara A. Anderson have written a text that clinicians and academics have been waiting for.
This book will bring visibility to the welfare of vulnerable populations around the world. The material in this book is well researched, sensitively delivered, and essential, not only for nurses but also
for all clinicians caring for vulnerable persons. The editors present clinicians with a much needed
resource that carefully addresses the unique challenges of advanced practice nurses who are in a
position to care for a variety of vulnerable populations.
As a society, we need to pay much more attention to caring for our vulnerable populations. The
numbers of persons in vulnerable populations around the world are increasing and not decreasing.
The fifth edition of Mary de Chesnay and Barbara A. Anderson’s Caring for the Vulnerable: Perspectives in Nursing Theory, Practice, and Research addresses the major issues of concepts and theories,
research, practice and programs, teaching and learning, and policy in regard to caring for vulnerable
populations. This latest edition is a must have not just for nurses but for all healthcare providers because it is a scholarly and authoritative book edited by the leading experts in vulnerable populations.
The scope of issues covered in this book is impressive. Chapter topics range from undocumented
immigrants to victims of gun violence, intimate partner violence, child maltreatment, hepatitis C,
child abuse, transgender patients, abandoned infants, migrant workers, sex trafficking, cardiomyopathy, and pandemics, such as Zika. The settings of vulnerable populations addressed in this text
are expansive, ranging from rural America to emergency departments to developed and developing countries. So many vulnerable persons are in need of our help.
Some chapters of this book specifically address nursing, such as the ones focusing on social injustice, strangulation related to intimate partner violence, and victims of domestic minor sex trafficking. However, this fifth edition of Caring for the Vulnerable enhances the work of practitioners,
researchers, educators, theorists, and policy makers in all healthcare professions.
This book is not just a scholarly text but also a valuable manual that represents a particular pinnacle of achievement within this field. I have little doubt this book will be read by many advanced
practice nurses and other clinicians who will find the information in it extremely valuable and its
message inspirational. The book will have an incredible impact on the care delivered by advanced
practice nurses to make a significant difference in the lives of vulnerable persons worldwide. Thank
you to the editors for your enduring passion to improve the lives of these long-forgotten people.
ix
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Acknowledgments
This book is a reflection of many people’s talents—first among them, both the new and returning
contributing authors. That social justice and care for the vulnerable is a universal phenomenon
among nurses is reinforced when we attend professional meetings and when we travel to our own
fieldwork sites and see social justice in action in some of the world’s poorest communities. It is inspiring to hear these authors speak and an honor to provide a forum for all who read this book to
hear about their work. We are deeply grateful to those scholars and practitioners around the world
who contributed to this work.
There are always technical support people who labor quietly behind the scenes of any published venture. The editors and staff at Jones & Bartlett Learning made sure the work was published
in a timely manner. We are grateful to Amanda Martin for her leadership and Rebecca Stephenson
for her attention to detail. Anna-Maria Forger was vital to the success of this book by spending untold hours editing.
The wonderful staff at Kennesaw State University, especially Lindsey MacKenzie, are always
supportive and helpful. Two graduate students developed most of the material for the Instructor Resource Manual. M’Lyn Spinks enthusiastically wrote items and Dr. Brenda Brown successfully completed her dissertation during the process of producing the Instructor Resource Manual.
Finally, and perhaps most importantly, the editors would like to thank all the vulnerable yet
resilient people with whom they have worked during their many years of clinical practice and education. Working in every corner of the world, the editors encountered, time and time again, the
strength of the human spirit and generosity of nature among people who have no reason to welcome strangers, yet who shared what they had and took the time to teach us about their cultures.
Mary de Chesnay
Barbara A. Anderson
x
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About the Editors
Mary de Chesnay, PhD, RN, PMHCNS-BC, FAAN, is a retired professor of nursing at Kennesaw State
University and former secretary of the Council on Nursing and Anthropology (CONAA) of the Society for Applied Anthropology (SFAA). Her clinical practice and research programs involve mostly
women and children who have been abused or trafficked. She has conducted ethnographic fieldwork
and participatory action research in Latin America and the Caribbean. She has taught a course in
vulnerable populations and qualitative research at all levels in the United States and abroad in the
roles of faculty, head of a department of research, dean, and endowed chair.
Barbara A. Anderson, DrPH, RN, CNM, FACNM, FAAN, Professor Emerita, Frontier Nursing
University, led the DNP program for 5 years. She currently serves on the program committee,
CONAA, SFAA. Her clinical practice and research has been on maternal health issues and nursing workforce issues. She has published many articles and a number of books on these topics. She
has worked with vulnerable populations in over 114 countries in public health program design and
evaluation, nurse-midwifery, and the education of health professionals.
xi
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Afterword
Being human, it is likely that each of us have felt vulnerable at some time in our lives. But what is
different between us and others who have been identified as being “vulnerable” in society? Who
are the vulnerable people and populations? What do we know about their lives, experiences, and
needs? How can we, as nurses, address their vulnerability and implement strategies that address
their healthcare needs?
Caring for the Vulnerable: Perspectives in Nursing Theory, Practice, and Research by Dr. Mary
de Chesnay and Barbara A. Anderson addresses these questions and resourcefully introduces its
readers to the meaning of vulnerability, not only from the traditional population-based viewpoint,
but also from individual, group, and community perspectives. Each chapter illustrates how nurses,
through their daily practice, can lead initiatives aimed to improve the health of the vulnerable from
a global perspective. Nurses are called to address vulnerability through their expertise as teachers,
practitioners, researchers, and/or policy advocates.
This book introduces readers to many instances in which individuals are vulnerable, some more
than others, simply because of their demographic backgrounds (race/ethnicity, age, and gender),
where they live (or do not live), heath literacy, insurance coverage, immigration status, lifestyle, and/or
socioeconomic situations. Others are deemed vulnerable because of their physiological and/or
psychological conditions and/or the lack of social support. Interestingly, nurses can also be among
the vulnerable and subjected to its consequences such as violence and addiction.
Recognizing the vulnerable and those at risk for being vulnerable is just the first step addressed
in this book. Readers learn about a diverse array of programs and solutions aimed to better understand the needs of the vulnerable, identify those most at risk for being vulnerable, and prevent and/or
address the consequences of being vulnerable. For example, nurse authors share their policy
expertise by advocating for the vulnerable to effect policy change. Nurse researchers explore frameworks and models to better understand the vulnerable and guide inquiry to build the resiliency of
the vulnerable and address negative issues associated with vulnerability such as bullying, addiction,
and violence. Nurse educators share creative teaching-learning strategies they have used to inform
their peers about the vulnerable and to prepare a future nursing workforce about caring for the
vulnerable using experiential learning activities in study abroad programs and regional fieldwork.
In summary, Caring for the Vulnerable provides readers with a wealth of information to help
them recognize those who are vulnerable and utilize their expertise to address health disparities
and their consequences. The value of nurses’ advocacy, research, practice, and teaching talents are
essential to reduce disparities and promote social justice.
Joan Such Lockhart, PhD, RN, AOCN, CNE, ANEF, FAAN
Clinical Professor
Duquesne University School of Nursing
Pittsburgh, PA
xii
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Contributors
Jill Alliman, CNM, DNP
Faculty
Frontier Nursing University
Ricardo A. Ayala, PhD
Post-Doctoral Research Fellow
Ghent University
Belgium
Cheryl Tatano Beck, DNSc, CNM, FAAN
Distinguished Professor
University of Connecticut
Anne Watson Bongiorno, PhD, APHN-BC, CNE
Professor
State University of New York Plattsburgh
Margaret Anne Bortko, FNP, DNP
Family Nurse Practitioner
Blue Hill Family Medicine
Doris M. Boutain, PhD, RN, PHNA-BC
John and Marguerite Walker Corbally
Professor in Public Service
Associate Professor
University of Washington School of Nursing
Brenda Brown, RN, BSN, MS, DNS, CNE
Part-Time Nursing Faculty Member
Kennesaw State University
Kathryn Bruno, BSN, RN
Graduate
Kennesaw State University
Sr. Rosemary Donley, PhD, APRN, FAAN
Professor of Nursing and the Jacques Laval
Chair for Justice for Vulnerable Populations
Duquesne University
Genie E. Dorman, PhD, RN
Professor; Interim Associate Director,
Graduate Nursing Programs
Kennesaw State University
Kelly Dunn, MSN, NP-C, CCRN
Acute Care Cardiology Nurse Practitioner
Piedmont Heart Institute
Laura Elledge, MSN, APRN, FNP-C
Multiple Sclerosis Center of Atlanta
Jessica Ellis, PhD, CNM
Assistant Professor
University of Utah
Christie Emerson, DNS, RN, FNP
Senior Lecturer
Clinical Agency Liaison and BSN Part-Time
Faculty Coordinator
Kennesaw State University
Pamela J. Evans, MSN, CCRN
Polk Medical Center
Tricia Flake, DNP, FNP-C
Spencer Family Medicine
Jennifer Foster, PhD, CNM, MPH, FACNM, FAAN
Clinical Professor of Nursing
Emory University
Elizabeth G. Giganti, BSN, RN
Registered Nurse
Children’s Healthcare of Atlanta
Alexander Giles, DNP, APRN
Clinical Assistant Professor
Kennesaw State University
xiii
xiv
Contributors
Gregory Grevera, DNP, FNP-BC, AACRN
Jazz Pharmaceuticals
Karen Hande, DNP, ANP-BC, CNE
Associate Professor of Nursing
Vanderbilt University School of Nursing
Diane L. Keen, DNS, RN, CNE
Clinical Assistant Professor
Kennesaw State University
WellStar School of Nursing
Camille Payne, PhD, RN
Professor of Nursing
Kennesaw State University
Amy P. Roach, MSN, RN
Clinical Assistant Professor
Kennesaw State University
Vanessa Robinson-Dooley, PhD, LCSW
Assistant Professor of Social Work
Kennesaw State University
Amanda P. Knowles, MSN, RN
Nurse Practitioner
Sara Rowan, MSN, APRN
Nurse Practitioner
Joan Such Lockhart, PhD, RN, AOCN, CNE, ANEF, FAAN
Clinical Professor and MSN Nursing
Education Track Coordinator
Duquesne University School of Nursing
Gwendolyn Short, DNP, MPH, APRN, FNP-BC
Director, Nurse Practitioner Program
St. Catherine University
Nicole Mareno, PhD, RN
Assistant Professor
Kennesaw State University
Rachel Simmons, DNP-C
Community Health Center
Jason Smith, MSN, APRN
Nurse Practitioner
Elise J. Matthews, RN, PhD, BScN, BA
Assistant Professor, Faculty of Nursing
University of Regina
Adjunct Professor, Department of Psychology
University of Saskatchewan
Anny Sosebee, RN, BSN, MSN
Nurse Practitioner
Jeri A. Milstead, PhD, RN
Senior Nurse Consultant
Milstead Innovations
Edwige Goby Konwo Tayo, MSN, RN
Nurse Practitioner
Susan Rutledge Stapleton, CNM, DNP, FACNM
Research Committee Chair
American Association of Birth Centers
Rocio Elizabeth Núñez, PhD
University of Santiago de Chile
School of Nursing
Chile
Markus Thulin, PhD
University of Cologne
Institute for Iberian and Latin-American
History
Germany
Lauren Sillery Oberg, MSN, APRN
Nurse Practitioner
Pauline Herold Tither, DNP, MBA, RN, CNP
Family Nurse Practitioner
Pamela H. Ograbisz, DNP, APRN
Director of Telehealth for LocumTenens.com
and Jackson Healthcare
Tracey Wiese, DNP, FNP, PMHNP, SANE-A
Jeanne Parrish, DNP, LNP, FNP-C, EMT-P
Forensics Coordinator/Nurse Practitioner
University of Virginia Medical Center
Forensics Team
Andrew Youmans, MSN, RN, CNM, CPEN, FAWM
Nurse Clinician
Emory Healthcare
UNIT I
Concepts
and Theories
© RichLegg/ E+/ Getty Images
Our greatest glory is not in never falling, but in rising every time you fall.
—Confucius
© Bartosz Hadyniak/ E+/ Getty Images
CHAPTER 1
Vulnerable Populations: Vulnerable People. . . . . 3
CHAPTER 2
Advocacy Role of Providers . . . . . . . . . . . . . . . . . 17
CHAPTER 3
Intersection of Racial Disparities
and Privilege in Women’s Health . . . . . . . . . . . . 29
CHAPTER 4
Social Justice in Nursing: A Review
of the Literature . . . . . . . . . . . . . . . . . . . . . . . . . . 39
CHAPTER 5
Health Literacy: Through the Lens
of One Provider. . . . . . . . . . . . . . . . . . . . . . . . . . . 55
CHAPTER 6
Bullying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
CHAPTER 7
Applying Middle-Range Concepts
and Theories to the Care of Vulnerable
Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
1
© MachineHeadz/ iStock/ Getty Images
2
Unit I Concepts and Theories
CHAPTER 8
Resilience in Health Care and Relevance to Successful
Rehabilitation Among Registered Nurses with Substance
Use Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
CHAPTER 9
Afghan Women Refugees: Application
of Intersectionality Feminist Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
CHAPTER 10 A Holistic Approach to Women’s Employment . . . . . . . . . . . . . . . . . . . . . . 111
CHAPTER 1
Vulnerable Populations:
Vulnerable People
Mary de Chesnay
OBJECTIVES
At the end of this chapter, you will be able to:
1. Distinguish between vulnerability and the vulnerable population.
2. Identify at least five populations at risk for health disparities.
3. Discuss how poverty influences vulnerability.
▸
Introduction
This chapter introduces key concepts that will help you examine healthcare issues related to vulnerability and vulnerable populations. These concepts form a theoretical perspective on caring for
the vulnerable that considers not only ethnicity as a cultural factor but also the culture of vulnerability. The chapter provides nurses with information to provide culturally competent care.
▸
Vulnerability
Vulnerability incorporates two distinguishable aspects. One is the individual focus, in which individuals are viewed within a system context; the second is an aggregate view of “vulnerable populations.” Much of the literature on vulnerability is targeted toward the aggregate view, and nurses
certainly need to address groups’ needs. But nurses also treat individuals, and need to learn how to
care for both individuals and groups. It is critical for practitioners to remember that groups are composed of individuals. We should not stereotype individuals in terms of their group characteristics,
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
3
4
Chapter 1 Vulnerable Populations: Vulnerable People
but working with vulnerable populations is cost-effective because we can detect epidemiological
patterns in groups and develop some standardized interventions to provide better quality health
care to more people.
Vulnerability means “susceptibility” and has a specific connotation in health care that refers to
those at risk for health problems. According to Aday (2001), vulnerable populations are those at risk
for poor physical, psychological, or social health. Any person can be at risk statistically by having
the potential for certain illnesses based on a genetic predisposition (Scanlon & Lee, 2007). Anyone
can also be vulnerable at any given point in time because of life circumstances or a response to illness or events. However, the notion of a vulnerable population is a public health concept that refers to vulnerability by virtue of status. Some groups are at risk at any given point in time relative
to other individuals or groups.
To be a member of a vulnerable population does not necessarily mean a person is vulnerable.
Many individuals within vulnerable populations would resist the notion that they are vulnerable
because they prefer to focus on their strengths rather than their weaknesses. These people might
argue that the term vulnerable population is just another label that healthcare professionals use to
promote a system of health care that they, the consumers of care, consider patronizing. It is important to distinguish between a state of vulnerability at any given point in time and a labeling process
in which groups of people at risk for certain health conditions are further marginalized.
Some members of society who are not members of the culturally defined vulnerable populations described here might be vulnerable only in certain contexts. For example, nurses who work
in emergency rooms are vulnerable to violence. Hospital employees and visitors are vulnerable
to infections. Preschool teachers and day care providers are vulnerable to a host of communicable diseases because of their daily contact with young children. Individuals who work with heavy
machinery are at risk for certain injuries. Patients are vulnerable to their nurses, who hold their
lives in their hands.
Other examples of vulnerable groups might include people who pick up hitchhikers, drivers who drink alcohol, people who travel on airplanes during flu season, college students who are
cramming for exams, and people who are caught in natural disasters. There is an unfortunate tendency in our culture to judge some vulnerable people as being at fault for their own vulnerability
and to blame those who place others at risk. For example, rape victims have been blamed for enticing their attackers. People who pick up hitchhikers might be viewed as foolish, even though they
intended to show kindness and consideration for those stranded by car trouble. Airline passengers
who continually sneeze might anger their seatmates, who feel at risk for catching a communicable
disease. While it is logical to argue that we should be more cautious about personal protection in
societies in which dangers exist in so many contexts, that concept is quite different from blaming
the victim. Criminals and predators need to be held accountable for criminal behavior. Victims can
be taught self-defense tactics, but they need to be reassured that the crime was not their fault simply because they were in the wrong place at the wrong time.
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Vulnerable Populations
Who are the vulnerable in terms of health care? Vulnerable populations are those with a
greater-than-average risk of developing health problems (Aday, 2001; Sebastian, 1996) by virtue
of their marginalized sociocultural status, their limited access to economic resources, or their personal characteristics, such as age and gender. For example, members of ethnic minority groups
have traditionally been marginalized even when they are highly educated and earn good salaries.
Concepts and Theories
5
Immigrants and the poor (including the working poor) have limited access to health care because
of the way health insurance is obtained in the United States. Children, women, and the elderly are
vulnerable to a host of healthcare problems—notably violence, but also specific health problems
associated with development or aging. Developmental examples might include susceptibility to
poor influenza outcomes for children and the elderly, psychological issues of puberty and menopause, osteoporosis and fractures among older women, and Alzheimer’s disease.
Bezruchka (2000, 2001), in his provocative work, addressed the correlation between poverty
and illness but also asserted that inequalities in wealth distribution are responsible for the U.S. population’s state of health. Bezruchka argued that a country’s economic structure is the most powerful determinant of its people’s health. He noted that Japan, with its small gap between rich and
poor, has a high percentage of smokers but a low percentage of mortality from smoking. Bezruchka
advocated redistribution of wealth as a solution to health disparities.
The prescription drug benefit for Medicare recipients highlights Bezruchka’s observations about
disparities in the United States. Senior citizens are among the most vulnerable in any society, including the United States, where Medicare attempts to address some of their healthcare costs. However,
while practitioners might value a philosophy of social justice (Larkin, 2004), the implementation
of social justice is usually balanced with cost. In the case of the Medicare prescription drug benefit, the cost exceeded $700 billion over the period 2006–2015 (Gellad, Huskamp, Phillips, & Haas,
2006). The difficulties created by attempting to balance social justice with cost illustrate how difficult it is to implement Bezruchka’s ideas in the United States.
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Concepts and Theories
Aday (2001) published a framework for studying vulnerable populations that incorporated the
World Health Organization’s (1948) dimensions of health (physical, psychological, and social)
into a model of relationships between individual and community on a variety of policy levels.
In Aday’s framework, which is still applicable, the variables of access, cost, and quality are critical
for understanding the nature of health care for vulnerable populations. Access refers to the ability of people to find, obtain, and pay for health care. Costs can be either direct or indirect: Direct
costs are the dollars spent by healthcare facilities to provide care, whereas indirect costs are losses
resulting from decreased patient productivity (e.g., absenteeism from work). Quality refers to the
relative inadequacy, adequacy, or superiority of services.
Other authors who have addressed the conceptual basis of vulnerable populations include
Sebastian (1996; Sebastian et al., 2002), who focused on marginalization as a factor in resource
allocation, and Flaskerud and Winslow (1998), who emphasized resource availability in the broad
sense of socioeconomic and environmental resources. Karpati, Galea, Awerbuch, and Levins (2002)
argued for an ecological approach to understanding how social context influences health outcomes.
Lessick, Woodring, Naber, and Halstead (1992) described the concept of vulnerability in relationship to a person within a system context. Although their study applied the model to maternal-child
nursing, the authors argued that the model is appropriate in any clinical setting.
Spiers (2000) argued that epidemiological views of vulnerability are insufficient to explain
human experience and offered a new conceptualization based on perceptions that are both etic
(externally defined by others) and emic (defined from the person’s point of view). Etic approaches
are helpful in understanding the nature of risk in a quantifiable way. Emic approaches enable you
to understand the whole human experience and, in so doing, help people capitalize on their capacity for action.
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Chapter 1 Vulnerable Populations: Vulnerable People
Health Disparities
In 1998, President Bill Clinton made a commitment to reduce health disparities that disproportionately affect racial and ethnic minorities in the United States by the year 2010. The Department
of Health and Human Services selected six areas to target: infant mortality, cancer screening and
management, cardiovascular disease, diabetes, human immunodeficiency virus (HIV) infection
and acquired immune deficiency syndrome (AIDS), and immunization (National Institutes of
Health [NIH], n.d.). Subsequently, the NIH announced a strategic plan for 2002–2006 that committed funding for three major goals related to research, research infrastructure, and public information/community outreach (NIH, 2002). It is clear from the healthcare reform actions taken by
President Barack Obama that he intended to carry out the mission of improving health care for all.
The Healthy People objectives are even more important today than when first envisioned.
When Flaskerud et al. (2002) reviewed 79 research reports published in Nursing Research,
they concluded that although researchers have systematically addressed health disparities, they
have ignored certain groups (e.g., indigenous peoples). They also inappropriately lump together
Hispanic members of disparate groups that have their own cultural identity (e.g., Puerto Ricans,
Mexicans, Cubans, Dominicans).
Aday (2001) emphasized certain groups as vulnerable populations, and the 2010 priorities
showcased obvious needs within these groups and the needs remain to date:
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High-risk mothers and infants of concern. This population reflects the currently high rates of
teenage pregnancy and poor prenatal care, leading to birth-weight problems and infant mortality.
Affected groups include very young women, African American women, and poorly educated
women, all of whom are less likely than middle-class White women to receive adequate prenatal
care because of limited access to health care.
Chronically ill and disabled persons. Individuals in this category not only experience higher
death rates than comparable middle-class White women because of heart disease, cancer, and
stroke, but they are also subject to prevalent chronic conditions such as hypertension, arthritis, and asthma. The debilitating effects of such chronic diseases lead to lost income resulting
from limitations in daily living activities. African Americans, for example, are more likely to
experience ill effects and to die from chronic diseases.
Persons living with HIV/AIDS. In the past decade or so, advances in tracing and treating AIDS
have resulted in declines in deaths and increases in the number of people living with HIV/
AIDS. This increase is also due, in part, to changes in transmission patterns from largely male
homosexual or bisexual contact to transmission through heterosexual contact and sharing
needles among intravenous (IV) drug users.
Mentally ill and disabled persons. The population with mental illness is usually defined broadly
to include even those individuals with mild anxiety and depression. Prevalence rates are high
with age-specific disorders, and severe emotional disorders seriously interfere with activities
of daily living and interpersonal relationships.
Alcohol and other substance abusers. The wide array of substances that individuals in this group
abuse includes drugs, alcohol, cigarettes, and inhalants (such as glue). Intoxication results in
chronic disease, accidents, and, in some cases, criminal activity. Young male adults in their late
teens and early twenties are more likely to smoke, drink, and take drugs.
Persons exhibiting suicide- or homicide-prone behavior. Rates of suicide and homicide differ
by age, sex, and race. Elderly White and young Native American men are most likely to kill
themselves, and young African American, Native American, and Hispanic men are most likely
to be killed by others.
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Abusive families. Children, the elderly, and spouses (overwhelmingly women) are likely targets
of violence within the family. Although older children are more likely to be injured, young
female children older than 3 years of age are consistently at risk for sexual abuse.
Homeless persons. Because of ongoing problems in identifying this population, the estimated
prevalence rates at any given time are low and vary across the country. Generally, more young
men are homeless, but all homeless individuals are likely to suffer from chronic diseases and
are vulnerable to violence.
Immigrants/refugees. Health care for immigrants, refugees, and temporary residents is complicated by the diversity of languages, health practices, food choices, culturally based definitions
of health, and previous experiences with American bureaucracies.
Aday (2001) provided much statistical information for these vulnerable groups, but prevalence rates for specific conditions change periodically. Refer to the website of the National Center
for Health Statistics (www.cdc.gov/nchs) for updated information.
Trends in families over the last five decades (the lifetime of the baby boomers) show marked
changes in the demographics of families, and these changes affect health disparities. Currently, more
men and women are delaying marriage, with more people choosing to live together first. Divorce
rates are higher, with a concurrent increase in single-parent families. Out-of-wedlock births have
increased, partially due to decreases in marital fertility. There is a sharp and sustained increase in
maternal employment (Hofferth, 2003).
The Healthy People data stress health disparities as a major issue both in individual health and
in the healthcare system in that our structures are not addressing the needs of all citizens. While
there is an emphasis on culturally competent care for all, our health professions fall far short of
the goals we have set for the nation. Racial and ethnic disparities still exist and increase the cost
of health care. When prevention programs are applied differentially, health status decreases and
acuity levels increase with a corresponding cost not only in monetary terms but in human terms.
Complicating discussions about health disparities is that the literature often treats race and
socioeconomic status (SES) separately. Since a disproportional number of minorities are poor, it is
hard to tell if race or income is more important. Dubay and LeBrun (2012) studied the two together
and found that within each racial/ethnic group, a greater proportion of low- versus high-SES individuals were in poor health, a lower proportion had healthy behaviors, and a lower proportion had
access to care. For both socioeconomic levels, minorities had poorer health outcomes than Whites.
The populations discussed in this chapter represent a small proportion of those who are vulnerable. Anyone can be considered vulnerable at a specific point in time, but when we discuss vulnerable populations we usually think of people who are members of groups at risk for certain health
disparities, whether short-term or long-term. Efforts have been made in each edition of this text to
include authors who have an expertise with a variety of vulnerable populations.
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Institute of Medicine Study
The U.S. Congress directed the Institute of Medicine (IOM) to study the extent of racial and ethnic differences in health care and to recommend interventions that eliminate health disparities
(Smedley, Stith, & Nelson, 2003). The IOM found consistent evidence of disparities across a wide
range of health services and illnesses. Although these racial and ethnic disparities may occur within
a wider historical context, they are unacceptable, as the IOM pointed out. It urged a general public acknowledgment of the problem and advocated specific cross-cultural training for health professionals. Other recommendations included specific legal, regulatory, and policy interventions
8
Chapter 1 Vulnerable Populations: Vulnerable People
that speak to fairness in access; increases in the number of minority health professionals; and better enforcement of civil rights laws. IOM recommendations with regard to data collection should
monitor progress toward the goal of eliminating health disparities based on different treatment
for minorities.
Vulnerability to Specific Conditions or Diseases
A large portion of the research on specific conditions and diseases was generated from psychology data and predates much of the medical and nursing literature on disparities. Researchers on
vulnerability to these specific conditions tend to take an individual approach, in that conditions or
diseases are treated from the point of view of how a particular individual responds to life stressors
and how that response can cause the condition to develop or continue.
Researchers have focused on conditions too numerous to report here, but a search quickly
turned up references to alcohol consumption in women and vulnerability to sexual aggression (Testa,
Livingston, & Collins, 2000); rape myths and vulnerability to sexual assault (Bohner, Danner, Siebler, &
Stamson, 2002); self-esteem and unplanned pregnancy (Smith, Gerrard, & Gibbons, 1997); lung transplantation (Kurz, 2002); coronary angioplasty (Edell-Gustafsson & Hetta, 2001); adjustment to lower
limb amputation (Behel, Rybarczyk, Elliott, Nicholas, & Nyenhuis, 2002); reaction to natural disasters
(Phifer, 1990); reaction to combat stress (Aldwin, Levensen, & Spiro, 1994; Ruef, Litz, & Schlenger,
2000); homelessness (Morrell-Bellai, Goering, & Boydell, 2000; Shinn, Knickman, & Weitzman, 1991);
mental retardation (Nettlebeck, Wison, Potter, & Perry, 2000); anxiety (Calvo & Cano-Vindel, 1997;
Strauman, 1992); and suicide (Schotte, Cools, & Payvar, 1990).
Depression
Many authors have focused on cognitive variables to explain vulnerability to depression (Alloy &
Clements, 1992; Alloy, Whitehouse, & Abramson, 2000; Hayes, Castonguay, & Goldfried, 1996;
Ingram & Ritter, 2000). Others have explored gender differences (Bromberger & Mathews, 1996;
Soares & Zitek, 2008; Whiffen, 1988). In a major analysis of the existing literature on depression,
Hankin and Abramson (2001) explored the development of gender differences in depression.
They noted that although both male and female rates of depression rise during middle adolescence, incidence in girls rises more sharply after age 13 or puberty. This model of general depression might account for gender differences based on developmentally specific stressors and implies
possible treatment options.
Variables related to attitudes present a third area of focus in the literature (Brown, Hammen,
Craske, & Wickens, 1995; Joiner, 1995; Zuroff, Blatt, Bondi, & Pilkonis, 1999). In a study of 75
college students, researchers found that a high level of “perfectionistic achievement attitudes,”
as indicated on the Dysfunctional Attitude Scale, correlated with a specific stressor (e.g., poorer
than expected performance on a college exam) to predict an increase in symptoms of depression
(Brown et al., 1995).
Situational factors also produce vulnerability to depression. For example, the stress of providing care to patients with Alzheimer’s disease can produce or exacerbate symptoms of depression.
In a study of Alzheimer’s patients’ family caregivers, Neundorfer and colleagues (2006) found that
caregivers with prior depressive symptoms were not necessarily more prone to depression than
others, but rather that all subjects were more likely to experience depression when the patient’s
dependency was high.
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Despite the current trend to regulate depression via chemical means, promising evidence
suggests that emotion regulation instruction can modify a vulnerability to depression. Ehring and
colleagues (Ehring, Tuschen-Caffier, Schulke, Fischer, & Gross, 2010) conducted an experiment in
which they showed short films with sad content to people with depression as well as a control group.
According to the researchers, if subjects were vulnerable to depression, they would spontaneously
use dysfunctional emotional regulation strategies, but they were able to use more functional techniques if instructed to do so.
Schizophrenia
Smoking is a problem in individuals with schizophrenia, and there is some evidence that smokers
have a more serious course of mental illness than nonsmokers. The theory proposed to explain this
relationship is that schizophrenic patients smoke as a way to self-medicate (Lohr & Flynn, 1992).
In a twin study investigating lifetime prevalence of smoking and nicotine withdrawal, Lyons et al.
(2002) found that the association between smoking and schizophrenia may be related to familial
vulnerability to schizophrenia.
Other authors have examined the relationship between schizophrenia and personality. This
relationship remains largely unexplored, but it might provide a new direction in which to search
for knowledge about the vulnerability to schizophrenia. In their meta-analysis, Berenbaum and
Fujita (1994) found a significant relationship between introversion and schizophrenia; they suggested that studies on this link might provide new knowledge about the covariation of schizophrenia with mood disorders, particularly depression. In an analysis of the literature on the family’s role
in schizophrenia, Wuerker (2000) presented evidence for the biological view, concluding that there
is a unique vulnerability to stress in schizophrenic patients and that communication difficulties
within families with schizophrenic members may be due to a shared genetic heritage.
Eating Disorders
Acknowledgment of food as a common focus for anxiety has become a way of life. Canadian researchers use the term food insecurity to describe the phenomenon of nutritional vulnerability resulting from food scarcity and insufficient access to food by welfare recipients and low-income
people who do not qualify for welfare (McIntyre et al., 2003; Tarasuk, 2003). In the United States,
eating disorders are often a result of body-image problems, which are particularly prevalent in gay
men and heterosexual women (Siever, 1994). In a prospective study of gender and behavioral vulnerabilities related to eating disorders, Leon, Fulkerson, Perry, and Early-Zaid (1995) found significant differences among girls in the variables of weight loss, dieting patterns, vomiting, and use of
diet pills. They reported a method for predicting the occurrence of eating disorders based on performance scores on risk-factor status tests in early childhood.
HIV/AIDS
In a meta-analysis of 32 HIV/AIDS studies involving 15,440 participants, Gerrard, Gibbons,
and Bushman (1996) found empirical evidence to support the commonly known motivational
hypothesis. This hypothesis is derived from the Health Belief Model (Becker & Rosenstock, 1987).
The authors found that perceived vulnerability was the major force behind prevention behavior
in high-risk populations but cautioned that studies were not available for low-risk populations.
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Chapter 1 Vulnerable Populations: Vulnerable People
They also discovered that risk behavior shapes perceptions of vulnerability—people who engage
in high-risk behavior tend to see themselves as more likely to contract HIV than those who engage in low-risk behavior.
Evidence that high-risk men tend to relapse into unsafe sex behaviors is provided in a longitudinal study of results of an intervention in which researchers were able to successfully predict
relapse behavior (Kelly, St. Lawrence, & Brasfield, 1991). In a gender study on emotional distress
predictors, Van Servellen, Aguirre, Sarna, and Brecht (2002) found that although all subjects had
scores indicating clinical anxiety levels, HIV-infected women had more symptoms and poorer functioning than HIV-infected men.
In a study that used a vulnerable populations framework, Flaskerud and Lee (2001) considered the role that resource availability plays in the health status of informal female caregivers of
people with HIV/AIDS (n = 36) and age-related dementias (n = 40). The caregivers experienced
high levels of both physical and mental health problems. However, the use of the vulnerable populations framework explained the finding that the resource variables of income and minority ethnicity made the greatest contribution to understanding health status. In terms of the risk variables,
anger was more common in caregivers for HIV-infected patients and was significantly related to
depressive mood, which was also common among these caregivers.
Gender differences among HIV-infected people can exacerbate their response to the disease.
Murray et al. (2009) interviewed Zambian women infected with HIV about their reasons for taking or not taking antiretroviral drugs. The key informants revealed fears of abandonment by their
husbands, a decision to stop the medications when they felt better, choosing instead to die, and
fear of having to take medications for the rest of their lives. These women are vulnerable not only
to the disease but also to their family’s reaction. The barriers to taking medication that could save
their lives may be overshadowed by these risks, making them even more vulnerable.
Substance Abuse
In a study of 288 undergraduates, Wild, Hinson, Cunningham, and Bacchiochi (2001) examined
the inconsistencies between a person’s perceived risk of alcohol-related harm and motivation to
reduce that risk. These researchers found a general tendency for people to view themselves as
less vulnerable than their peers regardless of their risk status. Notably, however, the at-risk group
rated themselves more likely to experience harm than the not-at-risk group. The authors concluded that motivational approaches to reducing risk should emphasize not only why people drink
but also why they should reduce alcohol consumption. Additional support for the motivational
hypothesis—that perceived vulnerability influences prevention behavior—extends to marijuana
use (Simons & Carey, 2002) and to early onset of substance abuse among African American
children (Wills, Gibbons, Gerrard, & Brody, 2000).
In a study of family history of psychopathology in families of the offspring of alcoholics, researchers demonstrated that male college student offspring of these families are a heterogeneous
group and that the patterns of heterogeneity are related to familial types in relation to vulnerability to alcoholism. Three different family types were identified:
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Low levels of family pathology with moderate levels of alcoholism
High levels of family antisocial personality and violence with moderate levels of family drug
abuse and depression
High levels of familial depression, mania, anxiety disorder, and alcoholism with moderate levels
of familial drug abuse (Finn et al., 1997)
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Students and Faculty as Vulnerable Populations
The April 2007 shootings at Virginia Tech highlighted that college students in the United States
face a relatively different kind of threat, much as the Columbine tragedy did for high school students. Alienated young people who stalk and kill their classmates, for whatever reasons seem logical to them, represent a new type of terrorist. Yet, the literature has not documented either the
experience of these alienated students, nor have we found effective ways of treating and preventing violent behavior among them.
Some attempts have been made to document types of violence toward students. The American
College Health Association (ACHA) published a white paper on the topic (Carr, 2007) that largely
focuses on the most frequent types of student-directed violence, such as sexual assault, hazing, suicide, celebratory violence, and racial/gender/sexual orientation–based violence. Although spree
killings are mentioned, not much attention can be given until more is known about these killers.
Some attention has been given to the relationship between alcohol use and violence. Marcus
and Swett (2003) studied precursors to violence among 451 college students at two sites and used
the Violence Risk Assessment tool to establish the relationship of patterns related to gender, peer
pressure, and alcohol use. Nicholson and colleagues (1998) examined the influence of alcohol use
in both sexual and nonsexual violence.
A British study on responding to students’ mental health needs illustrates how the previously
discussed categories of mental illnesses can be exacerbated in the vulnerable population of college
students with mental illnesses. Using surveys and focus groups, Stanley and Manthorpe (2001) assessed college students with mental illnesses and identified many issues related to the problems of
providing care to students. The authors noted that high rates of suicide and need for antidepressant medication strained the National Health Service’s resources, and that colleges varied widely
in their ability to provide effective interventions.
In an Australian study, researchers found a significantly high level of food insecurity among
college students. Food insecurity was measured by a yes response to a survey question about running out of food and not being able to buy more (Hughes, Serebryanikova, Donaldson, & Leveritt,
2011). Implications are not only related to student retention, progression, and success but also to
long-term health effects.
DalPezzo and Jett (2010) identified nursing faculty as a vulnerable population. They noted student incivility, horizontal violence, and abuse of power by administrators as examples of the pressures faculty face.
While these studies document some issues related to campus violence, they do not go far enough
to explain and prevent the types of spree killings students have experienced in the last decade. The
threat of copycat attacks has engendered continuing fears among students, parents, and teachers.
More research is needed on personal characteristics of these young killers, potential interventions,
and prevention strategies.
Other Vulnerable Populations
Combat Veterans
The increasing warfare around the world produces a population of ex-soldiers experiencing not
only the physical trauma of combat but also psychological trauma, resulting in long-term disorders
such as post-traumatic stress disorder (PTSD). Revised guidelines for treatment indicate that, in
most cases, the best recommendation for treatment is trauma-focused cognitive behavioral therapy (Hamblen, 2017).
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Chapter 1 Vulnerable Populations: Vulnerable People
Transgender Persons
These individuals are at higher risk for sex trafficking and street violence due to their status. A
study by Dinno (2017) noted that homicide rates for young Black and Latina transgender adults was
higher than in the comparison group. Dinno emphasized that these young people should be considered a vulnerable population. Another risk factor for transgendered women who take hormone
therapy is increased thromboembolic risk, and lower doses are recommended (Streed et al., 2017).
Priorities for Research on Vulnerable Populations
Healthcare providers and researchers tend to develop their own priorities for research and then derive clinical treatments from them, which is one of the current views on evidence-based research.
However, when providers do not consider emic data, they can miss the mark by developing strategies that patients do not see as their priority and, therefore, do not follow. In a study designed to
elicit what priorities patients would set, a team of multidisciplinary researchers from the Midwest
asked people to share their priorities. The researchers concluded that members of these vulnerable
populations (in underserved communities) prioritized research on quality of life, patient-doctor
relationship, special needs, access, and comparing approaches (Goold et al., 2017.)
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Conclusion
A growing body of literature has focused on the concept of vulnerability as a key factor of concern
for practitioners who work with clients that have many kinds of presenting problems. Vulnerability has two aspects—the individual and the group. For the individual, practitioners and researchers focus on the patient’s vulnerabilities to specific conditions or diseases, but in public health, the
group concept is dominant, and intervention is directed toward aggregates. When working with
clients from vulnerable populations, it is critical to understand that they might not view themselves
as vulnerable and may actually resent labels that imply they are not autonomous.
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CHAPTER 2
Advocacy Role of Providers
Mary de Chesnay and Vanessa Robinson-Dooley
OBJECTIVES
At the end of this chapter, you will be able to:
1. Compare and contrast the concept of advocacy from the viewpoints of nursing and social work.
2. Identify key features of the patient advocate’s role.
3. Provide an analysis of your patient cases from the viewpoint of the social worker or nurse.
▸
Introduction
People are vulnerable to illness, injury, and psychological trauma in many contexts of their lives,
but they should be safe with their healthcare providers. Sometimes, that is furthest from the truth.
As healthcare practitioners, we sometimes believe that we know best, and, although we often do
know best technically, we do not always know what might be best for the client at that moment,
nor do we consult with one another for the good of the client. The political nature of health care
means that we often make decisions for the good of the organization rather than for the good of
the patient. An example of this kind of decision making is limiting visiting hours in intensive care
units. In the past, visits by family members were limited to 5 minutes every hour, justified on the
basis that staff members were too busy caring for patients to deal with visitors. Now, hours are more
liberal even though patient acuity levels are higher.
This chapter describes advocacy as a team effort and demonstrates through case studies how
you can function as an advocate and how a team of healthcare professionals can work together for
the good of their clients. We review the nursing literature separate from the social work literature
because the roles of each professional are distinct. The case studies bring the two disciplines together
to show how the roles can complement each other. We hope that readers will be inspired to look
for ways in which to collaborate—to bring the skills and talents of many disciplines together for
the sake of the patients, all of whom are vulnerable when they need our services.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 2 Advocacy Role of Providers
Review of the Nursing Literature
The Patient Advocacy Concept
The nursing literature on patient advocacy seems to be divided into the conceptualization of advocacy
(Hyland, 2002) and the role functions of an advocate. Bu and Jewesky (2006) conducted a concept
analysis of patient advocacy by using Walker and Avant’s (1995) procedure. The concept analysis
generated a mid-range theory with three attributes of patient advocacy: safeguarding autonomy,
acting on the patient’s behalf, and championing social justice. These attributes recognize the vulnerability of patients, the need for some protection within the healthcare system while respecting
autonomy, and the international recognition of the patient advocate’s role.
The attributes described here are consistent with the role of advocate that institutional review
boards (IRBs) play in research involving human and animal subjects. The federal regulations for
composition of IRBs mandate inclusion of lay members specifically for keeping researchers honest
by ensuring that investigators consider the study population’s needs and the study’s effects on the
people who participate. Mmatli (2009) goes even further in his paper on including people with disabilities in evidence-based research by arguing that such individuals need to be involved not only
in designing studies but also in making decisions about the research’s application.
In a critical review of the nursing literature on advocacy, Mallik (1997) argued that the literature lacks clarity in the operationalization of the advocacy concept, suggesting that authors tend to
focus more on defending the advocate’s role than on explaining it. Historical reasons for justifying
the need for the role are explained by cultural shifts in the roles of physicians and patients’ rights.
Over time, distrust of experts and technology created a climate of fear, resulting in a higher level of
participation by patients in decision making about their own care. The result was the creation of a
patient’s bill of rights and the role of the patient advocate (Annas, 1988).
Annas also believed that the nurse is in an ideal position to serve as an advocate (Annas &
Healey, 1974). Nurses have certainly filled this role quite ably, and there are many examples of nurses
taking on healthcare organizations as whistle-blowers. Nevertheless, members of other disciplines
may also serve as effective advocates. For example, social workers might be even more effective
than nurses in this role because they do not act directly with the medical care of patients and do
not participate in historical doctor-nurse games. Even so, to claim the role for any one discipline
is not only disrespectful to our colleagues in health care but self-serving and inconsistent with the
spirit of advocacy. What seems clear is the need to understand the context of the advocacy role
both for the profession, mindful of the rules and regulations, and for the professional and practice
setting (Jugessur & Iles, 2009).
In a provocative paper discussing advocacy, Zomorodi and Foley (2009) clarified the thin line
between advocacy and paternalism. As healthcare providers who are experts in the treatment of
disease, we can easily cross the line between speaking for a patient’s right to self-determination and
deciding we know what is best for the patient. This thinking is an occupational hazard for nurses
and physicians. Consider the case of a 45-year-old small business owner hospitalized for myocardial infarction. His heart attack comes the day his most trusted employee resigns and the night before a major sales presentation. If he does not get the contract, his business could fail. Because he is
the breadwinner, his wife and five children are also at risk if he cannot work. The patient recovers
nicely from the acute episode and is in the ICU asking for a phone to make some calls to explain
his absence at the meeting. The staff knows that rest and medications are the best treatment and
that he should not be upset by anything. They assume that allowing him to talk about business
would place him at risk for another heart attack. Unfortunately, denying him the use of the phone
Review of the Nursing Literature
19
causes his anxiety to escalate, which creates a paradoxical effect: His heart rate increases and his
blood pressure skyrockets as he sees his life’s work destroyed because he couldn’t have access to a
phone for 10 minutes.
The paternalistic approach is particularly prevalent in settings in which multidisciplinary teams
are used to deliver patient care. While nurses tend to use the language of advocacy, physicians often
use the language of medical decision making (McGrath, Holewa, & McGrath, 2006). As one physician put it, “Of course, we are a team and I am the captain.” Fortunately, the nursing profession
has evolved from an individual perspective to a systemic perspective in which nurses collectively
act to change institutional culture (Mahlin, 2010).
The Patient Advocate’s Role
Pullen (1995) argues that the nurse’s role as advocate is essential to modern health care because of paternalism in health care. Paternalism reduces the patient to a passive recipient of
care and forces the patient to depend on the integrity and self-regulation of the providers.
Yet, patients are often unable to make decisions for themselves without help, either owing
to ignorance of their own complex health issues or because of temporary incapacitation.
The nurse as advocate can play a major role in helping patients regain autonomy. In the example
described earlier, the nurse as advocate might have offered to stay near the monitoring equipment
in the nurses’ station while the patient made the call to make sure he would be safe. However, there
are cultural factors that can interfere with the professional’s view of treatment. An example that
is emerging as immigration increases from developing countries is the practice of female genital
cutting (McCrae & Mayer, 2014). How do nurses balance respect for cultural tradition with ideas
about sanitation, rights of female children, and acculturation to a society that does not approve of
female genital cutting?
Community-based participatory action research enables communities to generate relevant
knowledge to benefit their own people. Similarly, patient advocacy groups can benefit healthcare
consumers. Lara and Salberg (2009) describe how advocacy groups may play a role in health policy by linking patients and consumers of healthcare services with policy makers. Patients, for their
part, have realized that they can serve as their own advocates. Consequently, they are increasingly
educating themselves by searching the Internet for information on their diseases or symptoms and
coming to appointments armed with more sophisticated questions for which they demand answers.
Further support for the value of partnerships between patients or consumers and providers comes from a study of 405 patients and 118 nurses in 12 hospital units in Finland. Vaartio,
Leino-Kilpi, Suominen, and Puukka (2009) found that patients varied in their acts of advocacy,
and nurses applied principles of advocacy in a haphazard way when caring for patients with postsurgical pain. They concluded that patients perceived care as being good most of the time but not
all the time, while nurses were quite content with their level of advocacy. The explanation for the
patients’ perception was that either they were not asked about their preferences or they did not
know to ask. At any rate, this lack of participation can be construed as a failure of nurses to provide sufficient information about options for patients and to invite patients to participate more
fully in decision making.
In a survey of 5,000 medical-surgical nurses registered in Texas, Hanks (2010) found that nurses
often cited certain role behaviors when describing their role as advocates. Education of patients
and families emerged as the key response, closely followed by communicating with others on the
team and ensuring adequate care. Issues of safety and ensuring that patients’ rights were protected
were also considered important responsibilities for advocates.
20
Chapter 2 Advocacy Role of Providers
While communicating effectively is a key component of effective patient advocacy, little has
been done to determine what effective communication in advocacy looks like. In a grounded theory study of 12 nurses at eight Midwestern hospitals, Martin and Tipton (2007) used the constant
comparative method to develop a typology of communication roles that included liaison, feedback remediation, counseling and support, system monitor, troubleshooter, investigator, and group
facilitator. An example of the liaison role is communicating with the physician on behalf of the
patient and family. Feedback remediation includes informing nurses when their behavior toward a
patient indicates a less than therapeutic approach. Counseling and support include behaviors such
as providing refreshments as well as the traditional counseling activities of listening and problem
solving. System monitoring is an important action in terms of environmental issues such as poor
room temperature. The troubleshooter makes sure that problems are resolved immediately, sometimes through informal connections such as calling the pharmacy to hurry a prescription. When
serious problems occur, the investigator takes action to discover the causes and fix them. Finally,
the group facilitator holds meetings with family members, staff, and physicians to make difficult
decisions such as those involving end-of-life care.
The literature seems clear about role functions and behaviors of nurses who are successful advocates, but how did they become so effective? Advocacy is learned behavior, implying
the importance of teaching role behaviors to students. In a synthesis of qualitative studies from
1993–2005, MacDonald (2006) found that while advocacy is a complex concept, it can be studied
within the context of relational ethics and, therefore, can be learned. The starting place is recognizing patients’ and clients’ vulnerability, and not just those who are developmentally disabled
(Jenkins, 2012) but anyone who is temporarily unable to advocate for themselves. Case studies
can help students identify the patient’s “authentic” wishes by helping students to clarify their own
values as they learn to help patients clarify theirs.
▸
Review of the Social Work Literature
Definitions
Advocacy has been defined in numerous ways within the social work literature. It has been called
one of the profession’s “cornerstone” activities (Clark, 2007, p. 3). Even though advocacy is often
viewed as one of the major roles for the generalist social worker, Dorfman (1996) states that
advocacy is also the clinical social worker’s role. The Encyclopedia of Social Work defines advocacy as the “act of directly representing, defending, intervening, supporting or recommending a
course of action on behalf of one or more individuals, groups, or communities, with the goal of
securing or retaining social justice” (Hoefer, 2006, p. 8; Mickelson, 1995, p. 95). The Social Work
Dictionary defines advocacy as the “act of directly representing or defending others” (Barker, 1995,
p. 11; Hoefer, 2006, p. 8). Both definitions speak to what social workers do in their roles as advocates.
Lens (2004) noted that advocacy could be viewed from the perspective of the activity that the
individual is performing. Activities such as brokering, case advocacy, and cause advocacy are all
part of social work practice (Lens, 2004). Pierce (1984) defined class advocacy as a form of advocacy in which social workers use their training and skills to influence social policies and programs
that are created to assist a particular group or potential client. Class advocacy is an activity that is
addressed in social workers’ professional code of ethics (Brawley, 1997). This form of advocacy
focuses on ensuring that clients receive services they are entitled to in the human service arena (Sheafor
& Horejsi, 2003). Sosin and Caulum (1983) defined advocacy through “activities” when they sought
Review of the Social Work Literature
21
to conceptualize advocacy by involving the actions of three social actors: the advocate, the client,
and the decision maker. This conceptualization resulted in advocacy being defined as the following:
An attempt, having as greater than zero probability of success, by an individual or group to
influence another individual or group to make a decision that would not have been made
otherwise and that concerns the welfare or interests of a third party who is in a less powerful
status than the decision maker.
(Sosin & Caulum, p. 13)
Advocacy has also been defined in the literature as an action that is defined by the setting in
which it is performed. Schneider and Lester (2000) note that advocacy involves the relationship among
the client and a particular system and the social worker working to influence the decision-making
process on behalf of the client. Hospitals are a familiar setting for social workers and their advocacy efforts. Advocacy in this setting involves the social worker intervening on behalf of the patient
to access needed resources when the organization is not meeting his or her needs (Faust, 2008).
Despite the varying definitions of advocacy found in the literature, it is clear that the meanings
are similar, and that advocacy is an important role for the social worker (Gilbert & Specht, 1976;
Lynch & Mitchell, 1995; Sosin & Caulum, 1983) both today and historically.
A Brief History of Advocacy and Social Work
Advocacy has been an integral part of the social work profession since its inception. Such advocacy
efforts have usually occurred in response to the social needs of the time.
During the Civil War and World War I, for example, social work focused on responding to
the major industrialization changes of this time period. Issues such as working hours, work conditions, and safety became the focus of the social workers’ advocacy efforts (Kirst-Ashman & Hull,
2009). The increased migration from rural areas all over the United States to larger cities was fueled by the hopes of prosperity through employment. Individuals came from these rural areas with
dreams of finding work in cities, but instead were often met with overcrowded neighborhoods and
living conditions that promoted health concerns for many (Kirst-Ashman & Hull, 2009). The settlement house movement of the 1880s represented a response to these poor inner-city living conditions. Settlement houses were places where religious leaders and others moved into neighborhoods
to interact with the poor and “advocate for child labor laws, women’s suffrage, public housing, and
public health” (Smith, 1995, p. 2130).
In contrast to the settlement movement, the Charity Organization Societies (COS) of the early
1900s focused on “curing individuals rather than on empowering communities” (Kirst-Ashman & Hull,
2009, p. 35). Faust (2008) observed that during the early period of the COS, at the turn of the 20th
century, these “friendly visitors” were concerned with the current social conditions. Although their
work sought to address what were perceived as “moral deficiencies” at that time, the ensuing activities, discussions, and work focused on eradicating the wretched conditions that plagued urban cities
(Faust, 2008; Miley, O’Melia, & DuBois, 2009). As Gilbert and Specht (1976) point out, this attention to
therapeutic and clinical interventions prevailed as the major theme of social work from 1935 to 1960.
Although advocacy was a part of the profession long before this time, it became an especially
prominent activity for social workers in the 1960s (Gilbert & Specht, 1976). The turbulent 1960s
were the period of the civil rights movement, and the pressures for social justice exerted as part
of that movement reaffirmed social workers’ need to focus on advocacy as a profession (Gilbert &
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Chapter 2 Advocacy Role of Providers
Specht, 1976). “The 1960s produced a new focus on social change versus individual pathology”
(Kirst-Ashman & Hull, 2009, p. 36), which required the social work profession to revisit its earlier
days of working to empower clients and move beyond therapeutic interventions. In 1969, an Ad
Hoc Committee on Advocacy publication included four major papers addressing the need for
advocacy-related work in social work (Gilbert & Specht, 1976). The significance of this committee
was that it was established by the national organization for the social work profession, the National
Association of Social Workers (NASW) Task Force on the Urban Crisis and Public Welfare Problems. “The Ad Hoc Committee of NASW reminded social workers of their social obligation [to
advocacy]” (Faust, 2008, p. 293). The NASW has, throughout the years, continued to affirm the
importance of advocacy for the social work profession. The NASW Code of Ethics (NASW, 1994)
details the responsibilities of social workers, including the responsibility to work to “promote general
welfare and social justice” (Lynch & Mitchell, 1995, p. 9).
Advocacy on behalf of clients has been an important role of social workers for more than
130 years. Advocating on behalf of clients has historically been the responsibility of social workers whether they are working as case workers, general practitioners, researchers, or clinical social
workers. Advocacy has become something that all social workers are expected to incorporate into
their professional role and identity (Gilbert & Specht, 1976, p. 288).
▸
Mental Health Advocacy: Successes and Shortcomings
There comes a time in everyone’s life when it feels like people are just not listening. From trying
to get through to a parent to wanting to scream at political officials, everyone has experienced the
frustration of being ignored. Mental health patients suffer this kind of dissatisfaction every day, and
it is for this reason that mental health advocates have become vital to their well-being. Advocacy
through legal, peer, and medical support is beneficial and necessary to the effective treatment and
recovery of mental health patients by providing a voice for those who would otherwise be silenced,
but it can also be counterproductive if not handled correctly.
Being an advocate has many different meanings, but the primary role of a person who holds this
responsibility is to defend and support the decisions made by and the legal rights of the person they
represent. It is easy to tread on the rights of individuals with mental illness because they may not feel
capable of expressing their rights to certain people or they may not even be aware that they have rights
at all. While it should be obvious that social workers, nurses, and other healthcare professionals should
respect the rights of their patients, that is unfortunately not the case. In many instances, a lack of understanding has proven to be detrimental to recovery for an individual with mental illness, while having empathy and consideration contributes greatly to a positive result (Stylianos & Kehyayan, 2012).
Because of this lack of understanding, maintaining the rights for those with disabilities is becoming a pertinent issue. The Convention of the Rights of Persons with Disabilities began circulating, and by 2010 had 146 signatories and 90 ratifiers. The basis of the Convention was to underscore
self-determination, merit, and confidence for those with disabilities to make their own choices. It
served as a form of advocacy for those with mental health issues by declaring that they deserve the
same respect and the same rights as everyone else. Having a mental illness does not make a person
incapable of functioning in society, and he or she should not be treated as such. In 1999, the U.S.
Supreme Court even determined that institutionalizing people with mental illness if they can be
treated as a member of the community was a form of discrimination according to the Americans
with Disabilities Act, and if possible, people should be placed back into society. This kind of legal
advocacy, though effective, can easily become complex (Stylianos & Kehyayan, 2012).
Mental Health Advocacy: Successes and Shortcomings
23
A less complex form of advocacy comes from those closest to the individual. Peers and mental health practitioners are always involved with people who have mental illnesses and can easily
become a source of support. Having support from friends whether a person is mentally ill or not
is always a source of comfort, which helps the individual to feel confident and empowered. Mental
health practitioners can be a source of comfort as well, as their main interest involves seeing progress in the individual, and they will help them reach that goal in the best ways possible (Stylianos
& Kehyayan, 2012).
Creating a world that advocates for all its people can be difficult when there are conflicts of
interest involved. However, the World Health Organization (WHO) has been paving the road to a
more equal society for a while. WHO’s purpose is to help advance world health, and it recognizes
that people with mental disorders have become stigmatized and are viewed as inept at making decisions. They are vulnerable to abuse and mistreatment by people who should care about their safety.
The organization also recognizes barriers these individuals face daily, such as the inability to receive
proper mental health services and information about these services, as well as poor treatment for
those who do receive help, and WHO seeks to actively work to break down these walls between mental health patients and the rest of society. Because of these reasons, WHO promotes mental health
advocacy to enact policies that protect the mentally disabled from harm and promote equality in a
way that other organizations or individuals cannot (Funk, Minoletti, Drew, Taylor, & Saraceno, 2006).
By using government support, even though a variety of factors can influence governments, great
strides can be made in mental health advocacy. Governments have access to resources that can open
communication channels between advocacy groups and mental health providers, which will allow for
greater cooperation between the two for better treatment of the mentally ill. Further, mental health
advocacy groups can work with governments to improve existing legislation and enact new laws that
will be beneficial to both the mental health patients and those who treat them. Government agencies
also can communicate with the public. Educating the people becomes a catalyst for positive change
even in small ways such as reducing the stigma of mental illness. Governments and advocacy groups
such as WHO together are strong influencers of mental health advocacy movements, and with any
hope will improve social attitudes toward people seeking mental health treatment (Funk et al., 2006).
Advocacy, although it sounds as straightforward as standing up for a person’s rights and passing
laws, is not that simple. Mental health advocates are often the only professionals who are working
to help the patients, which can lead to conflicts of interest if the patient has wants that conflict with
the professional’s opinion. In addition, advocates may easily become caught up in the issues they
are currently facing and forget to focus on long-term advocacy, such as policy reform, for future
patients. Together, these issues lead to advocates’ failure to provide for patients to the fullest extent
of their abilities. Placing policy change in a low priority position dwindles the availability of treatment for mental health patients, which is the exact opposite of the role advocates are meant to play.
Some characteristics of advocacy that should be present in all advocates are absent, which is also
nonproductive. These characteristics include thinking of families as assets instead of hindrances,
considering at-home treatment to be inadequate, and working jointly with the many people who
have vested interests in the patient’s well-being. Advocacy, while it is undoubtedly a positive influence for a patient, does not come unchallenged, and there is always work to be done (Knitzer, 2005).
Be it an individual, group, or government, mental health advocates have a difficult but crucial role to play in the lives of mental health patients. From acts as small as offering a source of
emotional support to as big as working with leaders to pass legislation, advocates work tirelessly to
improve the lives of those who need help most desperately. They have proven to be extremely beneficial to the health and recovery of their patients in the short term, while in the long term leading
the way for a better future for patients to come.
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Chapter 2 Advocacy Role of Providers
Interdisciplinary Benefits and Approach
In a world where social service organizations have seen their budgets shrink, staff diminished, and
the ability to provide services cut due to difficult economic times, the interdisciplinary approach
to providing services has become even more essential. Working to provide services in an era characterized by limited resources has resulted in clients working with multiple agencies and multiple
professions. In this challenging environment, an interdisciplinary team approach to service provision is the best approach.
Social work and the nursing profession are well suited to be in the forefront of the interdisciplinary service provision movement. Clients’ compartmentalized problem focus is often a result of
having to seek services from multiple organizations. The interdisciplinary team approach to service lessens compartmentalization of problems by clients and can be found in many mental health
and medical settings (Johnson, 1995). “Medical settings also make use of the interdisciplinary team
approach in providing for both the psychosocial and the physical needs of the patients; diagnostic
centers also make considerable use of this type of team approach” (p. 119). When agencies work
together and take an interdisciplinary team approach to helping, the client recognizes, respects,
and benefits from this approach. Most importantly, the professions and social service community
ensure the most effective and efficient use of public resources.
▸
Case Studies
CASE STUDY 21: KAYLA
Kayla is a 16-year-old girl from a public high school. She is a straight-A student, a member of multiple
clubs, and captain of the gymnastics team. Her boyfriend, Chris, is also a model student and supports
her in every way. Lately, the pressures of keeping up with school work, extracurricular activities, sports,
and her relationship have been weighing heavily on her. Adding to the stress, rumors have started to
circulate around school that Kayla’s parents, who are active in her education and attend all her gym
meets, are getting a divorce. Teachers have noticed she has begun to withdraw from social activities,
preferring to keep to herself as she puts the finishing touches on her assignments. As Kayla is eating
lunch in the library one afternoon to escape the chaos of the cafeteria, her political science teacher,
Mr. Turner, sits down across from her. Mr. Turner talks to her about the football team and whether
they each think the team will win or lose the homecoming game next Friday. Each following day, Mr.
Turner returns to the library at lunchtime. Kayla tells Mr. Turner about her plans for the future, where
she is going to college, her last date with Chris, and other small updates on her life. Soon, Kayla begins
asking Chris to eat lunch with her and Mr. Turner. Chris invites his friends to lunch in the library shortly
thereafter, and what began as just Kayla and Mr. Turner quickly becomes a small lunchtime gathering.
Kayla now spends less time at lunch worrying about her grades and other trivial matters, and more
time enjoying her friends’ company. By spending time with Kayla when she was determined to isolate
herself, Mr. Turner became an advocate for Kayla’s mental health.
Case Studies
25
CASE STUDY 22: MRS. SMITH
Laura Smith is a 24-year-old mother of three who lives in a one-room motel unit and works at a
low-paying waitress job at a local café. Although the restaurant chain where she works offers health
insurance, she cannot qualify because she is scheduled to work 29 hours per week.
Recently, one of Laura’s children developed a cough and fever. Laura was able to have her child
seen at the local emergency room, but the treatment was limited such that it covered only enough
medication for 3 days of treatment. Laura was told she should follow up with the child’s primary care
physician and have some testing done to confirm that the cough was not something more serious.
The emergency room doctor also recommended that her child receive a vaccine that might prevent
future problems. Laura explained to the doctor that she did not have a regular physician or insurance,
and she could not afford to pay for a vaccine or any future doctor visits. The emergency room doctor
made a referral to the social work department in the hospital and asked if someone could assist Laura
with accessing resources to get her medical needs met. The emergency room nurse, who had been
working with Laura and her son, completed the referral to the social work department and asked the
social worker to come and meet with Laura as soon as possible given Laura’s limited flexibility with her
employer.
The social worker came to the emergency room and met with Laura and her child. The
emergency room nurse remained in the room because Laura was becoming agitated and nervous
about the numerous individuals asking her for personal and medical information during this hospital
visit. The nurse thought her presence might provide Laura with a sense of consistency and assist with
calming her fears about the presence of the social worker.
The social worker met with Laura and collected background information about her current home
environment, employment, and potential social support network. After determining that Laura would
need some community resources beyond what the hospital could provide, the social worker and
the nurse met to discuss community agencies that might be able to assist Laura and her family. The
nurse recalled the opening of a community health clinic about 1 mile from the motel where Laura
resided. Given the proximity to Laura’s current home, this was an ideal option for her child’s follow-up
appointment. The social worker agreed to make a call to the clinic to determine if Laura might qualify
for services.
The social worker was told by the clinic staff that the clinic provided services to families
underinsured or uninsured. The clinic also had a sliding-scale policy that it used if families could afford
to pay only a small amount. Laura was referred to the clinic and received the following services:
1. Laura was scheduled to come to the clinic and complete her intake and income assessment
paperwork. A social work intern student was assigned to assist her with completing her
paperwork.
2. Laura’s son was seen by the nurse practitioner to evaluate his cough and other symptoms.
3. It was recommended to Laura that she should have a brief physical examination because she
had not seen a doctor for several years. Her primary focus had been work and her children, and
it was suggested that a physical might provide Laura with some knowledge about her own
health status. A nurse practitioner completed her physical examination.
4. The social worker at the clinic asked Laura if there were any other areas in which she might
need assistance. Laura stated that she could use some assistance with housing, employment,
and food. The social worker and the social work intern provided Laura with a contact name and
direct number for the local housing authority to determine if she would qualify for assistance
with Section 8 housing (housing assistance provided to families meeting federal guidelines).
(continues)
26
Chapter 2 Advocacy Role of Providers
CASE STUDY 22: MRS. SMITH
(continued)
Laura was also provided with a referral for a food bank (in the same building as the clinic) so
that she would be able to get food after her time at the clinic. Finally, she was referred to an
employment support program (provided with an actual contact name and direct number) to
assist her with locating full-time employment.
5. The nurse practitioner at the clinic provided Laura with a prescription for the medications she
needed for her child. The social worker assisted Laura with completing prescription assistance
paperwork to qualify for prescription assistance from the pharmaceutical company.
CASE STUDY 23: MR. JACKSON
Marty Jackson is a 35-year-old homeless man who has had repeated incarcerations for alcohol abuse,
public drunkenness, and simple assaults when drunk. Marty’s most recent arrest occurred while he
was loitering in a local park in a downtown urban area. Individuals at the park called the police and
reported that a man was “harassing” individuals in the park. The police arrived at the park to find Marty
incoherent and disoriented. The police officer observed that Marty had an alcoholic odor and had
difficulty walking. The officer also observed that Marty had an open wound on his hand that had been
hastily wrapped in a soiled bandage.
The police officer transported Marty to the local hospital for observation. During the ride in
the police car, Marty complained that “Marvin” was taking up too much of the backseat and was
threatening him with a knife. The only occupants in the vehicle were the police officer and Marty. Upon
arrival at the hospital, the police officer noted to the intake nurse that Marty might be hallucinating
and recounted his comments on the ride to the hospital. The intake nurse placed Marty in an area of
the hospital where he could be observed and asked the police officer if he could remain with Marty
until a psychiatric evaluation could be completed.
The nurse then requested a psychiatric consult from the Mental Health Unit in the hospital. The
Mental Health Unit used an interdisciplinary approach to service provision, in which a team consisting of
a psychiatrist, a psychiatric nurse specialist, a clinical social worker, and a psychologist would see patients.
A licensed clinical social worker (LCSW) was sent to the emergency room and interviewed Marty.
The clinical social worker conducted a biopsychosocial assessment of Marty that included an
evaluation of whether he posed any harm to himself (suicide) or to others (homicide). The clinical social
worker’s assessment found that Marty was not homicidal or suicidal but noted that there was a possibility
of some mental instability. Marty did meet all the risk markers for alcoholism. He adamantly stated he
wanted to stop drinking, but he claimed the alcohol subdued his “moments of confusion and voices.”
The clinical social worker called for a consult from another member of the mental health team,
the psychiatric nurse. The psychiatric nurse reviewed the initial assessment and assessed Marty for
any mental health risk. The nurse and clinical social worker met and conferred about their assessment
findings and determined that Marty had bipolar disorder and needed medication to be able to
function without continued intervention by law enforcement. The psychiatric nurse and social worker
worked together to create the following treatment plan for Marty:
1. Marty was given a 3-day regimen of medication for bipolar disorder and scheduled for a
follow-up consult with the psychiatric team at the county services board. The clinical social
worker contacted the mental health worker on the crisis intervention team at the county
References
CASE STUDY 23: MR. JACKSON
2.
3.
4.
5.
▸
27
(continued)
services board and scheduled an appointment for Marty. Initially, the scheduler indicated
he could not be seen for at least 3 weeks. The social worker emphasized that Marty was an
alcoholic and had expressed a desire to stop drinking if he could get some help. The social
worker reminded the scheduler that withdrawal from alcohol could have serious medical
complications for individuals and Marty would need to be seen within 3 days to prevent any
serious medical harm. His appointment was scheduled for 3 days from the current day.
The psychiatric nurse followed up with the intake nurse to be sure Marty had received the needed
treatment for his hand wound and to ascertain if he would need any additional medications.
The social worker called the local shelter for men dealing with the issue of homelessness to inquire
if it had a bed for Marty. The shelter intake worker indicated that he would be able to stay at the
shelter but would need to remain sober and would be drug tested. The shelter staff indicated that
the program included Alcoholics Anonymous (AA) meetings and residents were required to attend.
The psychiatric nurse contacted a colleague (and fellow psychiatric nurse) at a local health clinic
to determine if Marty would qualify for follow-up services for his wound (physical health) and
monitoring until his appointment with the county services board. The community clinic had a
partnership with the local men’s shelter and agreed to schedule an appointment to follow up
with Marty the next morning.
Marty was allowed to regain his sobriety in the hospital that evening. Once he was able to
travel, he was provided with bus fare to the shelter. The social worker called the shelter to notify
the staff there of his impending arrival. The nurse called a few hours later to confirm Marty had
arrived at the shelter and reviewed his medical and mental health needs with his shelter case
worker (with a signed release from the patient).
Implications for Practice
These cases suggest how social work and nursing professionals can work effectively as an interdisciplinary team. The role of the social worker and nurse, in each of the cases, was that of advocate: In
each instance, the social worker and nurse sought out resources that would be useful to the client
and enhance the client’s ability to function in his or her everyday life. The role of advocate played
by the professionals in each case scenario was critical to the client’s health. The interdisciplinary
team worked together to avoid compartmentalizing each client’s issues, which ensured the delivery of more effective and efficient services for the client.
Acknowledgment: The authors acknowledge Marshall Smith, who conducted an early literature search for this chapter.
References
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Humana Press.
Annas, G., & Healey, J. (1974). The patients’ rights advocate. Journal of Nursing Administration, 4, 25–31.
Barker, R. (1995). The social work dictionary (3rd ed.). Washington, DC: NASW Press.
Brawley, E. A. (1997). Teaching social work students to use advocacy skills though mass media. Journal of Social Work
Education, 33(3), 445–460.
Bu, X., & Jewesky, M. A. (2006). Developing an id-range theory of patient advocacy through concept analysis. Journal of
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Clark, E. J. (2007). Advocacy: Profession’s cornerstone. NASW News, 52(7), 3.
Dorfman, R. A. (1996). Clinical social work: Definition, practice, and vision. New York, NY: Brunner/Mazel.
Faust, J. R. (2008). Clinical social worker as patient advocate in a community mental health center. Clinical Social Work
Journal, 36, 293–300.
Funk, M., Minoletti, A., Drew, N., Taylor, J., & Saraceno, B. (2006). Advocacy for mental health: Roles for consumer and
family organizations and governments. Health Promotion International, 21(1), 70–75.
Gilbert, N., & Specht, H. (1976). Advocacy and professional ethics. Social Work, 21, 288–293.
Hanks, R. (2010). The medical–surgical nurse perspective of advocate role. Nursing Forum, 45(2), 97–107.
Hoefer, R. (2006). Advocacy practice. Chicago, IL: Lyceum Books.
Hyland, D. (2002). An exploration of the relationship between patient autonomy and patient advocacy: Implications for
nursing practice. Nursing Ethics, 9(5), 472–482.
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Kirst-Ashman, K. K., & Hull, G., Jr. (2009). Generalist practice with organizations and communities (4th ed.). Belmont, CA:
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CHAPTER 3
Intersection of Racial
Disparities and Privilege
in Women’s Health
Jessica Ellis
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss the health disparities that exist among childbirth and family planning outcomes for
racial and ethnic minorities.
2. Understand privilege and identify ways an individual with privilege can influence others in need.
3. Apply strategies to reduce disparities in women’s health through a series of case studies.
▸
Introduction
There are significant ethnic and racial disparities that exist in women’s health. This chapter
will explore birth outcomes, racism, and privilege. This chapter explores theories that help
try to explain the continued gap in outcomes between racial and ethnic minorities and White
women. The chapter also describes and offers strategies for combating racial inequities in women’s health and provides case studies to aid you in applying concepts from this chapter. The
purpose of this chapter is to identify racial disparities in women’s health and discuss the intersectionality of privilege.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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30
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Chapter 3 Intersection of Racial Disparities and Privilege in Women’s Health
Background
Birth Outcomes
Significant racial and ethnic disparities exist among birth outcomes for pregnant women and
infants (March of Dimes, 2015). Black women have a greater risk of poor maternal and infant outcomes with higher rates of preterm birth, low birth-weight babies, and infant mortality (Thiel de
Bocanegra et al., 2017). Additionally, Black women face higher rates of rapid repeat pregnancies.
Maternal and Infant Mortality Statistics
Black women are four times more likely than White women to die in childbirth—41/100,000 vs.
11/100,000 (March of Dimes, 2015). Black women have higher rates of preterm birth than White
women (16 percent vs. 10 percent) and are twice as likely to have a low-birth-weight infant when
compared with White women (13 percent vs. 7 percent). Black women are more than twice as
likely to lose a baby in stillbirth or to experience the death of their infant as compared with White
women (11.5/1,000 vs. 5.2 /1,000).
These differences persist even after controlling for other risk factors, such as age or socioeconomic status (SES). For example, if you are a Black woman educated at the graduate level, your risk
of experiencing an adverse outcome mentioned previously is higher than a White woman with a
high-school education. Other vulnerable populations have similar trends although not as drastic
as seen for Black women. There is a growing body of research that indicates the quality of health
care from preconception through postpartum care has a significant impact on ethnic minority
women (Howell, 2018).
Racism and Chronic Oppression
Pregnant ethnic and racial minority women face an oppressive maternity care hierarchy within a
continuing climate of racism. These women face what it means to be a woman, what it means to
be an ethnic or racial minority woman in the maternity care system. Multiple hierarchy oppressive
systems come together to create intersectionality. These systems are layered with cumulative and
synergistic oppressive factors. There is a critical need for ethnic and racial minority women to receive respectful, evidence-based care because they are already at a great disadvantage.
The skin you’re in: A qualitative study. An effort to understand the chronic oppression ethnic
and racial minorities face comes from a qualitative study on the effects of racism. This study using
focus groups with 40 Black women of childbearing age (Nuru-Jeter et al., 2009) reported that these
women experienced racism throughout their lives. In this study, women shared their stories of
the first time they recalled feeling racism. The shared stories were vivid and emotional, reflecting
interpersonal, institutional, and internalized racism. These stories took place in neighborhoods,
in schools, and while shopping. Women also shared experiences of continued direct and vicarious
racism. One reported stressor was the effects of racism on their children. These women reported
physical symptoms such as feeling sick, headaches, stomachaches, or shaking.
Although racial disparities are multifactorial, research has shown that they cannot be linked
to race at the genetic level due to ancestors coming from Africa. It is thought that health disparities
may be closely related to environmental or lifestyle factors, as SES and education level do not fully
account for the differences in disparities. The following theories were identified in the literature
as possible reasons disparities persist despite attempts to narrow the gaps in healthcare outcomes.
Theories
31
White privilege
White privilege is a term for a societal advantage that benefits people identified as White in Western
countries (Kendall, 2002). People with White privilege have an advantage that others do not have,
and they have not done anything to earn the advantage except for being born White. An example
of another common privilege is a male privilege in which men enjoy dominance and power just
for being male.
Often, people with privilege do not see themselves as being any more powerful or different from
others. If you are an individual with privilege there are two things you can do: Identify your societal privilege, and use the privilege to help others around you. For example, listen to others with a
new perspective, use your time or voice to increase awareness for change in your community, and
work together with others to make a change.
Perceptions of Privilege
SES and race affect the perception of privilege. In a study (Stepanikova & Oates, 2017), the perceptions of racial privilege and racial discrimination were explored by assessing the behavioral risk
factor surveillance system among Blacks, Native Americans, and Whites who sought care in the
past 12 months. Perceptions of racial privilege were highest in Whites and less common in Blacks
and Native Americans. The researchers found SES to be an important social detriment of perceived
privilege and perceived discrimination in health care, and they found that its role varied by the indicator and racial group. For example, White persons with little education and no health insurance, educated Blacks, and individuals who face cost-related barriers to care were at an increased
risk of perceived discrimination.
▸
Theories
Ethnic and racial disparities among women are multifactorial, making it hard to fully describe the
reasons for the varied health outcomes. Several theories have attempted to explain the differences
in healthcare outcomes among populations. These theories and models offer explanations or frameworks for continued study.
Critical Race Theory
Critical race theory (CRT) is a theoretical framework used to examine the complexities related to
racial inequities. The theory was first used in the social sciences, and is based on critical theory,
which is a philosophical approach to examine culture and society, at the intersection of race, law,
and power. CRT was introduced in public health, offering a new paradigm to examine racial inequities. The theory provided a methodology to examine complex racial concepts and challenge
racial hierarchies (Ford & Airhihenbuwa, 2010). Researchers have used CRT that incorporates a
solution-focused approach to provide culturally sensitive treatments for African American women
(Quinn & Grumbach, 2015).
Weathering
Weathering hypothesis argues that the increased allostatic load or cumulative wear and tear from exposure to repeated or chronic stress Black women face may account for the racial disparities seen in
32
Chapter 3 Intersection of Racial Disparities and Privilege in Women’s Health
birth outcomes (Burris & Collins, 2010; Geronimus, 1992). It has been noted that younger African
American mothers have higher survival rates for their infants, which may suggest that the health of
African American women deteriorates in early adulthood owing to their cumulative socioeconomic
disadvantage (Geronimus, 1992). The biological component of the theory is poorly understood, and
epigenetic research may help shed some light on the underlying mechanism of racial disparities.
Epigenetics
Ethnic and racial minority groups have poor health outcomes that seem to persist over generations (Mendoza, Huang, Crusto, Sun, & Taylor, 2017). The study of epigenetics gives a biological
basis for the cumulative impact of stress and environmental exposures over a lifetime and crossing multiple generations (Burris & Collins, 2010; Huang, Jiang, & Zhang, 2014; Willis, McManus,
Magallanes, Johnson, & Majnik, 2014). Epigenetics literally means “on top of ” genetics and is the
study of the modification in gene expression rather than changes in the genetic code itself. It is
unknown whether epigenetics can help explain the exposure-disease relationships or account for
the differences in racial disparities in outcomes (Vick & Burris, 2017).
Health Disparities Framework
The health disparities framework has been used by the American College of Obstetricians and
Gynecologists (ACOG) to frame the problem of racial disparities in women’s health care (ACOG,
2015). The health disparities framework is commonly used in health services research to understand social determinants that underlie health disparities. The framework identified three factors
impacting continued disparities within populations: patient preferences and behaviors, healthcare system factors, and provider-related factors. The health disparities framework attempts to
explain a complex issue in simple terms, and as always, problems are multifactorial and not easily explained by the identified framework (Dehlendorf, Rodriguez, Levy, Borrero, & Steinauer,
2010; Kilbourne, Switzer, Hyman, Crowley-Matoka, & Fine, 2006).
Patient Preferences and Behaviors
Ethnicity and race are factors that influence patient preferences and behaviors. While ethnicity and
race can be reflective of a broader context of environmental, cultural, and medical factors affecting patients, individualized preferences may also exist. Some groups of ethnic and racial minority
women are more likely to have genetic mutations for certain diseases, such as sickle-cell disease
or thalassemia. Additionally, groups of ethnic and racial minority women may have similar cultural beliefs affecting aspects of medical care, such as dietary practices or levels of physical activity.
Healthcare System Factors
Healthcare system factors include health insurance and access to care. Insurance rates for ethnic
and racial minorities are less than the insurance rates for Caucasians.
Provider Factors
Provider factors, such as stereotyping and patient-provider communication, are important contributors to health disparities (Kilbourne et al., 2006). Stereotyping is a form of implicit bias that is
known to contribute to disparities in health for racial and ethnic minorities. For example, SES and
Strategies for Improvement
33
race have been shown to affect contraceptive counseling given by healthcare providers when recommending long-acting reversible contraceptives in women at high risk for unintended pregnancy.
It is unclear if these biases also affect other outcomes such as cesarean section rates or referrals for
infertility treatment. Poor communication can lead to distrust in the patient-provider relationship. The message may not be relevant to the person receiving it if it is not framed in an appropriate cultural context. Additionally, there is a mistrust of providers by some minority populations
based on historical events such as sterilization of poor women of color, which can decrease adherence to clinician recommendations.
▸
Strategies for Improvement
Access to Family Planning Services
Family planning is the ability of women and families to plan and time pregnancies, and it is fundamental to health and equity for women in society. Family planning research has shown that contraceptive counseling has a significant impact on women’s family planning outcomes. However,
research findings have shown many women were unhappy with the family planning counseling
they received. Additionally, deficiencies were found to exist in contraceptive counseling, such as
the provider not asking about pregnancy intention or contraceptive preferences (Dehlendorf et al.,
2017). Providers need continual training to improve counseling strategies and tailor counseling
interventions for each woman.
Significant racial and ethnic disparities exist in contraceptive preferences and contraceptive
methods available. Minority women tend to have higher rates of unintended pregnancy, which may
be due to the discrepancy between contraceptive preferences and the features currently available in
contraceptive methods (Jackson, Karasek, Dehlendorf, & Foster, 2016). Similarly, these differences
should inform the development of new contraceptive methods.
Access to Postpartum Contraceptive Care
Access to care in the postpartum period is a likely contributor to the disparities seen in ethnic
minority women’s and infant’s health outcomes (Thiel de Bocanegra et al., 2017). Access to family
planning services and contraception are essential components of postpartum care, as they help
women achieve appropriate pregnancy spacing and avoid rapid repeat pregnancy and preterm birth.
A study among low-income women using Medicaid services in California assessed racial and ethnic variations in postpartum care and found only half of the women attended a postpartum visit
and received contraception (Thiel de Bocanegra et al., 2017). When compared with White women,
Black women were less likely to attend a postpartum visit, less likely to receive any contraception,
and less likely to receive highly effective or long-acting forms of contraception.
Appropriate birth spacing varies from 18 months to 3 years between pregnancies. According
to the Mayo Clinic (www.mayoclinic.org), appropriate spacing is waiting anywhere from 18 to
24 months before beginning another pregnancy. WHO recommends having 3-year intervals
between pregnancies.
Increase Knowledge of Contraceptive Types and Use
Racial and ethnic differences exist regarding contraception knowledge and attitudes in both
young adults and men (Borrero, Farkas, Dehlendorf, & Rocca, 2013; Craig, Dehlendorf, Borrero,
34
Chapter 3 Intersection of Racial Disparities and Privilege in Women’s Health
Harper, & Rocca, 2014). Teenagers were noted to have lower contraceptive knowledge than
young adults. Immigrant populations were also noted as having low contraceptive knowledge
of contraceptive methods available in the United States. Otherwise, few differences were noted
in contraceptive knowledge between Black women and White women of all ages, suggesting differences in outcomes are likely attributed to factors other than contraceptive knowledge.
Among men, Black and Hispanic men had less knowledge about contraceptive methods as
compared to White men (Borrero et al., 2013). For example, Black and Hispanic men were less
likely than White men to know birth control pills are ineffective if two to three pills are missed in
a contraceptive pill pack and that fertility is not delayed after stopping contraceptive pills. Efforts
are needed to educate men, especially ethnic minority males, on contraceptive methods.
Better Contraception Counseling
Improving the quality of contraceptive counseling is one strategy to prevent unintended pregnancies (Dehlendorf, Krajewski, & Borrero, 2014). Counseling approaches should optimize a
woman’s experiences including developing a close relationship with healthcare providers and
using a shared decision-making model. Counseling should contain information on side effects
of each contraceptive method and should promote strategies for the continuation of contraceptive method use.
Pregnancy Intention
Half of the pregnancies in the United States are unintended, with the highest proportions occurring among Blacks, Hispanics, and teenagers (Craig et al., 2014). Pregnancy intention is a widely
studied concept in research and is a way to quantify whether a pregnancy is desired. Pregnancies
are further classified as either intended or unintended. The unintended pregnancies can be classified as either mistimed or unwanted. The premise is that unwanted pregnancies have poorer health
outcomes than other types of pregnancies because women are less likely to recognize early pregnancies versus intended ones. Women with unintended pregnancies are less likely to seek early
prenatal care or breastfeed. Additionally, infants from unwanted births are more likely to have a
low birth weight than infants from unintended pregnancies. Pregnancy intention is not always consistent with contraceptive use.
Guidelines
The CDC has family planning guidelines to aid providers in counseling patients regarding their
contraceptive choices. These guidelines may be particularly helpful in starting a contraceptive
conversation with ethnic minority women, as minority women have a higher risk for comorbid
medical conditions than Caucasian women. These medical conditions may preclude them from
using certain types of contraception. The U.S. Medical Eligibility Criteria (US MEC) and Select
Practice Recommendations (SPR) are valuable tools for guiding contraceptive counseling. The US
MEC includes recommendations for using specific contraceptive methods by women and men who
have certain characteristics or medical conditions. Clinicians can use these recommendations to
counsel individuals in making contraceptive choices. The guidelines are available on the CDC website and as a downloadable app for mobile devices.
Summary
35
Increase Engagement in Childbirth Education
The literature indicates that first-time mothers and women of color are less likely to take a childbirth class, and mothers on Medicaid are the least likely of all women to take a childbirth class.
Caucasian women are twice as likely to attend a childbirth class as compared to Black women
(Lu & Halfon, 2003). Indigenous populations, Native Americans, and refugees face higher rates of
maternal and infant mortality but are the least likely to access educational resources in communities such as childbirth education.
Abbyad and Robertson (2011) report that preparation for childbirth has been primarily focused
on Caucasian women. The researchers conducted the first reported study on African American
women’s preparation for childbirth from the perspective of African American healthcare providers and identified the following four themes: connecting with nurturers, traversing an unresponsive system, the need to be strong, and childbirth classes not a priority. The study also reports
the following recommendations for nurses and childbirth educators: include a self-awareness of
attitudes toward African Americans, empowerment of clients for birth, recognizing the impact of
pregnant women’s mothers, childbirth classes to meet the need of African American mothers, and
more research on the influences of racism and childbirth preparation.
Recruiting a Diverse Nursing and Midwifery Workforce
Midwifery care in the United States is provided by many types of midwives including certified
nurse-midwives (CNMs). CNMs are nurses who are trained to be midwives, usually at the graduate
level or higher. Midwifery care is linked with positive birth outcomes (Guerra-Reyes & Hamilton,
2017). Despite the good outcomes associated with midwifery care, little is known about the impact
of minority women providing or receiving midwifery care. Guerra-Reyes and Hamilton (2017) formulated a study to assess the care given by minority women using an Internet-mediated qualitative
design, where the self-described narratives on websites of 28 African American nurse-midwives, lay
midwives, and birth assistants were assessed for common themes. The themes that emerged identified
a strong link to the past and recognized African roots and current struggles for African American
women. Advocacy efforts were identified as recruiting more minority birth workers and extending the benefits of women-centered birth care to underserved populations. However, midwifery as
a profession is not diverse. In 2003, 4 percent of CNMs were African American, 1 percent Asian,
1 percent Hispanic, and 1percent male (Schuiling, Sipe, & Fullerton, 2005). Some evidence suggests
nursing students entering the workforce today are more diverse than the midwifery workforce statistics reported here. So, there is hope of recruiting a more diverse workforce in the future. Efforts
should be made to recruit nurses and midwives to numbers that mirror the populations they serve.
▸
Summary
There is still much work to do to decrease the disparities in women’s health outcomes for ethnic
and racial minority women. The disparities in women’s health outcomes are abysmal. More
research is needed on the intersections of race and privilege in women’s health. It is going to
take interdisciplinary research and healthcare teams to elevate outcomes for ethnic and racial
minority women.
36
▸
Chapter 3 Intersection of Racial Disparities and Privilege in Women’s Health
Case Studies
Support and education of individuals and families provide families of color with specific tools and
resources for empowerment. By understanding and supporting families of color, we can work together to decrease racial disparities. The following cases are composite cases, meaning they are not
based on any individual person but present a scenario that you may see in a clinical setting. The
cases will allow you to apply the content covered in this chapter.
CASE STUDY 31: CASES IN OBSTETRICS CARE
1. A 26-year-old G1P0 African American female at 23 weeks’ gestation by last menstrual period
(LMP) presents for her first prenatal visit.
a. What is her risk for preterm birth?
b. What counseling would you give to reduce risks for preterm birth?
2. A 20-year-old G1P0 female at 28 weeks’ gestation presents to the clinic for her second prenatal visit.
a. Does she have adequate prenatal care? If inadequate, what are some barriers to care this
patient may be facing?
b. What counseling would you give her about attending prenatal educational classes or birth
classes?
3. An OB/GYN practice serving a predominantly African American population employs a group of
nine midwives; one is Black.
a. Why doesn’t the practice recruit more Black midwives?
b. What are some benefits to the practice or patients of employing a Black midwife?
CASE STUDY 32: CASES IN FAMILY PLANNING
1. A 16-year-old African American female patient presents to a clinic reporting she missed her
last menstrual period. The patient has been with five partners in the past 2 weeks and reports
discharge and vaginal itching.
a. In what ways do patients’ preferences and behaviors affect access to care?
b. In what ways do healthcare system factors affect access to care?
c. In what ways do provider-related factors affect the use of birth control methods?
2. A 35-year-old G1P1 woman comes to a clinic with abdominal pain. She was recently diagnosed
with pelvic inflammatory disease (PID) but was unable to take all of her medication. She reports
her medications were stolen. She is facing housing and food insecurities and has been sleeping on
the streets since being treated for PID. She has a 17-year-old child who is currently in foster care.
a. In what ways do her behaviors affect access to care?
b. What healthcare system factors may affect care?
c. What provider-related factors may affect her care?
3. A 35-year-old G6P4 African woman presents to the clinic for a postpartum visit. The patient
speaks Amharic and needs an interpreter. Her two youngest children are 13 months apart, and
the patient does not want to start a contraceptive method, yet desires better birth spacing.
a. What is optimal birth spacing?
4. A 17-year-old female patient presents to the clinic for an annual exam. She is sexually active and
does not want a birth control method.
a. Does pregnancy intention always match contraceptive use?
b. What are strategies you could use to increase contraceptive knowledge?
References
37
References
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American health-care providers. The Journal of Perinatal Education, 20(1), 45–53.
American College of Obstetricians and Gynecologists. (2015). ACOG committee opinion no. 649: Racial and ethnic disparities
in obstetrics and gynecology. Obstetrics and Gynecology, 126(6), e130–134.
Borrero, S., Farkas, A., Dehlendorf, C., & Rocca, C. H. (2013). Racial and ethnic differences in men’s knowledge and attitudes
about contraception. Contraception, 88(4), 532–538.
Burris, H. H., & Collins, J. W., Jr. (2010). Race and preterm birth—the case for epigenetic inquiry. Ethnicity and Disease, 20(3), 296–299.
Centers for Disease Control and Prevention. (2017, September 26). US Medical Eligibility Criteria (US MEC) for contraceptive
use. Retrieved from https://www.cdc.gov/reproductivehealth/contraception/mmwr/mec/summary.html
Craig, A. D., Dehlendorf, C., Borrero, S., Harper, C. C., & Rocca, C. H. (2014). Exploring young adults’ contraceptive
knowledge and attitudes: Disparities by race/ethnicity and age. Women’s Health Issues, 24(3), 281–289.
Dehlendorf, C., Anderson, N., Vittinghoff, E., Grumbach, K., Levy, K., & Steinauer, J. (2017). Quality and content of
patient-provider communication about contraception: Differences by race/ethnicity and socioeconomic status. Women’s
Health Issues, 27(5), 530–538.
Dehlendorf, C., Krajewski, C., & Borrero, S. (2014). Contraceptive counseling: Best practices to ensure quality communication
and enable effective contraceptive use. Clinical Obstetrics and Gynecology, 57(4), 659–673.
Dehlendorf, C., Rodriguez, M. I., Levy, K., Borrero, S., & Steinauer, J. (2010). Disparities in family planning. American
Journal of Obstetrics and Gynecology, 202(3), 214–220.
Ford, C. L., & Airhihenbuwa, C. O. (2010). Critical race theory, race equity, and public health: Toward antiracism praxis.
American Journal of Public Health, 100(Suppl 1), S30–S35.
Geronimus, A. T. (1992). The weathering hypothesis and the health of African-American women and infants: Evidence and
speculations. Ethnicity and Disease, 2(3), 207–221.
Guerra-Reyes, L., & Hamilton, L. J. (2017). Racial disparities in birth care: Exploring the perceived role of African-American
women providing midwifery care and birth support in the United States. Women & Birth, 30(1), e9–e16.
Howell, E. A. (2018). Reducing disparities in severe maternal morbidity and mortality. Clinical Obstetrics and Gynecology.
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Huang, B., Jiang, C., & Zhang, R. (2014). Epigenetics: The language of the cell? Epigenomics, 6(1), 73–88.
Jackson, A. V., Karasek, D., Dehlendorf, C., & Foster, D. G. (2016). Racial and ethnic differences in women’s preferences for
features of contraceptive methods. Contraception, 93(5), 406–411.
Kendall, F. E. (2002). Understanding white privilege. Retrieved from https://www.cpt.org/files/Undoing%20Racism%20-%20
Understanding%20White%20Privilege%20-%20Kendall.pdf
Kilbourne, A. M., Switzer, G., Hyman, K., Crowley-Matoka, M., & Fine, M. J. (2006). Advancing health disparities research
within the health care system: A conceptual framework. American Journal of Public Health, 96(12), 2113–2121.
Lu, M. C., & Halfon, N. (2003). Racial and ethnic disparities in birth outcomes: A life-course perspective. Maternal and
Child Health Journal, 7(1), 13–30.
March of Dimes (2015). Racial and ethnic disparities in birth outcomes-fact sheet. Retrieved from http://www.marchofdimes
.org/materials/March-of-Dimes-Racial-and-Ethnic-Disparities_feb-27-2015.pdf
Mendoza, V. B., Huang, Y., Crusto, C. A., Sun, Y. V., & Taylor, J. Y. (2017). Perceived racial discrimination and DNA
methylation among African American women in the InterGEN study. Biological Research in Nursing, 20(2), 145–152.
https://doi.org/10.1177/1099800417748759
Nuru-Jeter, A., Dominguez, T. P., Hammond, W. P., Leu, J., Skaff, M., Egerter, S., . . . Braveman, P. (2009). “It’s the skin you’re
in”: African-American women talk about their experiences of racism. An exploratory study to develop measures of
racism for birth outcome studies. Maternal Child Health Journal, 13(1), 29–39.
Quinn, C. R, & Grumbach G. (2015) Critical race theory and the limits of relational theory in social work with women.
Journal of Ethnic and Cultural Diversity in Social Work, 24(3), 202–218.
Schuiling, K. D., Sipe, T. A., & Fullerton, J. (2005). Findings from the American College of Nurse-Midwives’ membership
surveys: 2000–2003. Journal of Midwifery and Women’s Health, 50(1), 8–15.
Stepanikova, I., & Oates, G. R. (2017). Perceived discrimination and privilege in health care: The role of socioeconomic
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Thiel de Bocanegra, H., Braughton, M., Bradsberry, M., Howell, M., Logan, J., & Schwarz, E. B. (2017). Racial and ethnic
disparities in postpartum care and contraception in California’s Medicaid program. American Journal of Obstetrics and
Gynecology, 217(1), 47.e41–47.e47.
Vick, A. D., & Burris, H. H. (2017). Epigenetics and health disparities. Current Epidemiological Reports 4(1), 31–37.
Willis, E., McManus, P., Magallanes, N., Johnson, S., & Majnik, A. (2014). Conquering racial disparities in perinatal outcomes.
Clinical Perinatology, 41(4), 847–875.
CHAPTER 4
Social Justice in Nursing:
A Review of the Literature
Doris M. Boutain
OBJECTIVES
At the end of this chapter, you will be able to:
1. State differences in how social justice is defined in nursing.
2. Compare and contrast the definitions of social justice used in the nursing literature.
3. Develop a concise statement about how to incorporate social justice awareness, amelioration,
and transformation into nursing research, education, or practice actions.
▸
Introduction
This chapter explores how social justice was conceptualized in the nursing literature between the
years 2000–2018. Analysis of this literature reveals that various authors subscribed to social, distributive, and market views of justice. Most authors, however, do not explicitly define the type of justice used in their work, or attend to the differences among these concepts. The three predominant
models of justice are reviewed first in this chapter, and then a framework for how nurses can focus
on injustice awareness, amelioration, and transformation as forms of social justice action is presented. The multiple methods of promoting a social justice agenda, from consciousness raising to
the re-creation of social policies, are also delineated. Recognizing the many ways to promote social
justice can have a transformational impact on how nurses teach, research, and practice.
Although social justice is not a new concept, the nursing literature lacks a coherent and complex understanding of its implications for studying societal health (Buettner-Schmidt & Lobo, 2012;
Drevdahl, Kneipp, Canales, & Dorcy, 2001; Grace & Willis, 2012; Lipscomb, 2011). Social justice is
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
39
40
Chapter 4 Social Justice in Nursing: A Review of the Literature
often mentioned only briefly, as an afterthought to elaborate discussions about ethics. When ethics
is defined in the forefront, the concept of social justice often recedes to the background, appearing
fleetingly in articles’ conclusion sections. Inattention to the subtle variations in how social justice
is conceived can inadvertently result in nursing practice, research, and education that are antithetical to a social justice agenda.
▸
Literature Search Methodology
A search of the Cumulative Index of Nursing and Allied Health (CINAHL) database from the years
2000 to 2018 identified a total of 618 publications classified with the terms social justice and nursing as major words in the subject heading. The manuscript authors ascribe a major subject heading to identify the main focus of their work. Those publications about social justice and nursing
included academic journal publications (n = 450), magazine publications (n = 57), dissertations
(n = 10), continuing education units (n = 16), and a book (n = 1).
Only resources published between 2000 and 2018 in English (n = 595) and with an abstract
available for review were assessed for inclusion in this chapter (n = 354). These criteria limited the
number of resources reviewed. Twenty-three articles were written in languages other than English.
Resources from academic journals (n = 255), dissertation abstracts (n = 10), continuing education
unit modules (n = 4), and nursing magazines (n = 4) were reviewed. Only publications emphasizing uncommon points are included in the reference list to limit the chapter’s length. The literature reviewed in the sections about views of justice in nursing education, research, and practice is
limited to resources written in the stated time frame. Publications from nursing, sociology, social
work, philosophy, public health, and religious studies supplement the literature analysis in the sections about the literature review critique and implications. Many of these resources were written
prior to the literature review time frame.
This chapter will first define how the concept of justice is used in nursing. Then we will explore
the different ways of viewing justice. The chapter also provides examples about how social justice
is articulated in articles focused on nursing education, research, and practice. Last, we provide a
more complex view of social justice actions for nurses to consider before the chapter summary.
Defining Justice in Nursing
The ethical principle of justice was referenced frequently in the nursing literature surveyed. More
than half the publications retrieved equated justice with what is fair. Authors primarily described
ethics as a framework for understanding how values, duties, principles, and obligations informed
a person’s sense of societal fairness. The notion that two prominent orientations to ethics exist was
also highlighted in the literature (Mathes, 2004, 2005; Woods, 2012). Specifically, ethics can be defined by a care orientation or by a justice orientation. For example, ethics can be defined by universal truths—justice orientation—or in relationship to caring for others in context—care orientation
(Mathes, 2004, 2005).
Although many authors mentioned justice, few articles defined justice beyond notions of ethical fairness (Drevdahl et al., 2001; Harris, 2005; Kneipp & Snider, 2001) or ethical relationship formation (Myhrvold, 2003). Most articles focused on caring for persons after injustice had already
occurred, not changing ways of thinking, policies, or procedures to promote justice. A few articles
focused on the contradictions of working for justice in the context of unjust nursing environments
(Galon & Wineman, 2010; Giddings, 2005a). Another scholar provided insight about how to promote
Literature Search Methodology
41
policy changes for health disparity reduction (Roberts Kennedy, 2013). Only one article examined
the theoretical connection between social justice and spirituality (Pesut, Fowler, Reimer-Kirkham,
Taylor, & Sawatzky, 2009).
Exploring the philosophical underpinning of justice, Drevdahl et al. (2001) compared the
concepts of social justice, distributive justice, and market justice. They posited that most nurses
neither consider the distinction among concepts related to justice (Drevdahl et al., 2001) nor distinguish between social justice and social analysis (Stys, 2008). A few authors broaden the discussion of ethics to globalization (Falk-Rafael, 2006) or structural inequality (Sistrom & Hale, 2006)
as having implications for social justice.
Without an intricate understanding of the different views of justice, nurses may limit their problem-solving abilities and direct-action possibilities when attempting to understand how unjust social
conditions influence health status, access, and delivery. Although concepts such as care (Boersma,
2006) and culture (Jackson, 2003) are not mutually exclusive to a justice ideology, inattention to the
distinctions between care and justice may result in limited theoretical analysis and, thus, action. A
review of the American Nurses Association’s Code of Ethics with Interpretive Statements, Nursing’s
Social Policy Statement, and Nursing: Scope and Standards of Practice, for example, revealed inconsistent and superficial conceptualizations of social justice (Bekemeier & Butterfield, 2005). These
points were also a cause for debate in review of the Canadian Nurses Association’s (CNA) 2002
Revised Code of Ethics (Hubert, 2004; Kikuchi, 2004). The disjunctions among the practice, policy,
and politics of justice, however, have a long history in nursing (Murphy, Canales, Norton, &
DeFilippis, 2005). For this reason, it is important to explore the most prominent forms of justice
in nursing literature today.
Social, Distributive, and Market Justice: Within and Beyond
the Nursing Literature
Nurses have consistently lamented the inconsistent definitions of social justice in the nursing literature (Buettner-Schmidt & Lobo, 2012; Falk-Rafael & Betker, 2012; Grace and Willis, 2012; Matwick &
Woodgate, 2017; Thurman & Pfitzinger-Lippe, 2017). Even when social justice is defined, it is rarely
acted on (Drevdahl, 2013). These trends have been noted for years.
This review identified social, distributive, and market justice as the most common forms of
justice referenced in the nursing literature. Social justice is often defined as a concern for the equitable measuring of benefits and burdens in society (Boutain, 2005, 2008; Redman & Clark, 2002).
Social justice is also—albeit less often—defined as changing social relationships and institutions to
promote equitable relationships (Drevdahl et al., 2001). In addition to creating, maintaining, and
supporting equitable relationships, social justice is concerned with the use of equitable policies,
procedures, and practices. Distributive justice is discussed in reference to the equal distribution of
goods and services in society (Silva & Ruth, 2003). Market justice posits that people are entitled only
to those goods and services that they acquire according to guidelines of entitlement (Young, 1990).
Although these forms of justice may appear similar at first glance, there are distinct differences
between them when using multidisciplinary sources (Beauchamp, 1986; Whitehead, 1992). Social
justice is concerned with making equitable the balance between societal benefits and burdens, and
having this balance evidenced in ways of being, acting, and governing. It posits that social rights
exist, and that collateral responsibilities accompany those rights (Lebacqz, 1986). There is a combined focus on accepting both the benefits and burdens in society. Social beings are to both give and
receive in equitable measure, using equity as a framework for relating to one another. Equity, derived
from the Greek word epiky, means that persons must conduct themselves with reasonableness and
42
Chapter 4 Social Justice in Nursing: A Review of the Literature
moderation when exercising their rights (Whitehead, 1992), and consider the social good in light
of their access to power. Distributive justice involves equality more than equity; this concept is used
most often to discuss the allocation or distribution of goods and services in society (Young, 1990).
Equality focuses on giving the same access and resources to different socially vulnerable groups,
without consideration for what factors created those differences. In social programming, this often results in an uplift for all populations, those with and without the targeted vulnerability, without a concurrent diminishing of inequality.
Social justice advocates explore social relationships, including how those relationships form
the basis for the allocation of goods and services (Young, 1990). Social justice focuses on equity,
not equality or sameness. The concepts of social and distributive justice are somewhat parallel yet
have different primary foci of study (Drevdahl et al., 2001).
Market justice is also viewed as a form of justice in nursing (Drevdahl, 2002), which is based
on honoring the rights of those who have earned entitlement to those privileges. Market justice
permits inequality as long as those inequalities result from a fair market system. Only those who
earn rights can receive their entitled privileges in a market system. Those who earn no rights do
not have secured privileges.
Critics of the market justice agenda note that using the word market as an adjective for justice
is an oxymoron (Beauchamp, 1986). Justice is a word most often used to discuss fairness, equity,
or the process of deliberation. The term market is most often concerned with the balance between
monetary value and goods allocation. According to these critics, the two terms do not work together
when discussing equity. Simply “applying the word ‘justice’ to ‘market’ does not bring the concept
into the realm of justice” (Drevdahl et al., 2001, p. 24). Social justice is not a parallel model to market justice; rather, it is antithetical to a market model (Beauchamp, 1986). These two ways of viewing the world, therefore, diametrically oppose each other and simultaneously coexist.
An example may clarify the difference among social, distributive, and market justice. Using a
social justice framework, everyone in the United States would be entitled to health care as needed
if health care was deemed a right of citizenship. Health care, using a social justice view, is a moral
obligation and a right of citizenship. A distributive justice framework would give a certain level of
health care to everyone because of citizenship. The leveling of health care is needed to make sure that
enough healthcare services are available for all citizens to receive at least minimal benefit. Within
a distributive justice model, health is a right of citizens but not necessarily a moral responsibility.
Persons can receive health care as a result of how much they can pay for those services in a market
system. The focus of a market system is not on moral or citizenship rights, but rather on making
sure that those citizens who want the good of health care, for example, can pay for those services.
All forms of justice, although somewhat distinct, may coexist to varying degrees. For example,
some healthcare services in the United States are given as needed, such as the care given to children who are orphaned. In other cases, minimal health care is given, such as the medical and dental benefits associated with Medicaid. Persons who can afford more treatment or faster treatment
may get those services as well if they can pay a particular price; an example is healthcare clinics
that are designed to give expanded services if clients pay certain access fees. Although these three
forms of justice are noted in the nursing literature to varying degrees, seldom does the literature
discuss how these views of justice guide nursing education, research, or practice.
Views of Justice in Nursing Education Articles
Several scholars have called for a reexamination of social justice in nursing, both in the descriptions of social justice in foundational documents used to teach students (Valderama-Wallace, 2017)
Literature Search Methodology
43
and in use of theoretical frameworks about social justice that do not move beyond the individual
nurse-patient dyad (Thurman & Pfitzinger-Lippe, 2017). An analysis of foundational documents
in nursing like the Code of Ethics, Scope and Standards of Practice, and Social Policy Statement
reveals inattention to the sociopolitical context and conditions in which nurses work and provide
care (Valderama-Wallace, 2017). Nursing students are resultantly not taught to use their collective
power as future nurses to address structural injustices that continue to minimize health opportunities and create health disparities. Nursing education could benefit from civic education (Clark,
Miller, Leuning, & Baumgartner, 2017), whereby nursing students are taught to use their agency to
promote citizen and professional investments in health.
Most resources about nursing education and justice focus on the clinical preparation of undergraduate students to meet the needs of a culturally diverse population (Ezeonwu, 2013; Herman &
Sassatelli, 2002; Leuning, 2001; Mohammed, 2014; Redman & Clark, 2002; Scanlan, Care, & Gessler,
2001). Simulations are viewed as novel ways to educate future nurses using a social justice framework
(Menzel, Willson, & Doolen, 2014) in addition to service-learning education (Groh, Stallwood, &
Daniels, 2011). Since the mid-2000s there has been an increased focus on using online learning (Breen & Jones, 2015), co-curricular experiences (Davis, Sullivan, & Guzman, 2018), digital
storytelling (LeBlanc, 2017), and poverty simulations (Menzel et al., 2014) to promote thinking
about social justice issues.
Other publications proclaim the need for a global consciousness (Leuning, 2001; Messias,
2001), critical thinking (Pereira, 2006), culturally sensitive evidence-based practice (McMurray,
2004), and human rights education (Fitzpatrick, 2003) among nurses as the starting point for justice awareness. Also present in the nursing literature are curricular considerations (Fahrenwald
et al., 2005; MacIntosh & Wexler, 2005; Myrick, 2005; Vickers, 2008), teaching models (Bond,
Mandleco, & Warnick, 2004; Boutain, 2005; Fahrenwald, 2003; Lapum et al., 2012; Leuning,
2001), clinical evaluation frameworks (Boutain, 2008), case examples, and service-learning experiences (Groh et al., 2011; Herman & Sassatelli, 2002; Redman & Clark, 2002) that use justice
as a framework to educate undergraduate students. A limited number of articles focus on teaching justice content in general (Abrams, 2009) or in graduate education (Browne & Tarlier, 2008;
Shattell, Hogan, & Hernandez, 2006). Only one article was found that explored how teaching social justice affects faculty directly (Fahrenwald, Taylor, Kneipp, & Canales, 2007). Few articles
use social justice as a theoretical framework for educational scholarship (Kirkham, Hofwegen, &
Harwood, 2005; Moule, 2003) or to understand how to conduct educational research in nursing
(Comer, 2009).
Although some nurse educators discuss the practical application of justice principles, few distinguish between the use of social justice and distributive justice concepts. For instance, authors
may define social justice using distributive justice principles of equality or as working with vulnerable populations (Redman & Clark, 2002). One manuscript introduces justice in terms of contractual justice, meaning the fair and honest contract between equals (Oddi & Oddi, 2000). In one
instance, the term social justice was used but never defined (Herman & Sassatelli, 2002). Rarely is
social justice used as a framework to critique nursing education models, examine student-faculty
relationships (Oddi & Oddi, 2000; Scanlan et al., 2001), or develop a comprehensive curriculum
(Boutain, 2005; Snyder, 2014).
Continuing nursing education activities focus on promoting an ethics orientation to justice
or social justice actions in nursing role enactment. The ethics orientation is illustrated in continuing education offerings about nursing practice concerning cancer pain control (Paice & Coyne,
2017), infants (Carter, 2017), children (Purdy & Wadhwani, 2006), persons in prison with cancer
(Lyckholm & Lucas Glancey, 2016), hospice care (Longenecker, 2010; Turkoski, 2005), and women
44
Chapter 4 Social Justice in Nursing: A Review of the Literature
and families (Logsdon & Davis, 2010). A few nurses offer ideas about how to include social justice in the role of clinical nurse specialists (Bell & Hulbert, 2008) and occupational health nurses
(Postma, 2006). An ethical case study about working with nurses from other countries was also
noted (Haddad & Vernarec, 2002).
Even fewer authors advance discussions about how to integrate social justice in nursing education as a curricular feature. Boutain (2005, 2008) described curricular changes in nursing undergraduate education to promote learning, praxis, and education of social justice actions. Giddings
(2005b) proposed a three-position, flexible model for how nurses may develop a social consciousness. It focused on understanding (1) acquired, (2) awakened, and (3) expanded social consciousness among nurses. The contextualized model offers a way to work with nurses considering the
different ways to acquire social justice knowledge.
Views of Justice in Nursing Research Articles
Social justice is not well articulated in nursing research articles. There is a scarcity of authors who
explicitly defined how social justice was used as a theoretical research framework (Blondeau et al.,
2000; Clark, Barton, & Brown, 2002; Giddings, 2005a, 2005b; Grant, Giddings, & Beale, 2005).
It was also not clear how social justice was used as a measurement parameter for understanding concepts related to nursing (Altun, 2002), or as an outcome of a particular methodological approach
(Sullivan-Bolyai, Bova, & Harper, 2005).
Most articles about justice and nursing research focus on the care of vulnerable populations
or working with those who society has marginalized (Alderson, 2001; Barnes and Brannelly, 2008;
Dresden, McElmurry, & McCreary, 2003; Guenter et al., 2005; Lind, Prinsloo, Wardie, & Pyrch,
2010; McKane, 2000; Mill & Ogilvie, 2002; Rew, Taylor-Seehafer, & Thomas, 2000; Thomas,
2004). Nurses (Alexis & Vydelingum, 2004; Giddings, 2005a, 2005b; Mantler, Armstrong-Stassen,
Horsburgh, & Cameron, 2006; Spence Laschinger, 2004) and nursing students (Grant et al., 2005;
Thuma-McDermond, 2011) were the most common study participants in research studies exploring issues of justice.
Few scholars studied how social justice was defined or used by clients, from their point of view.
One such study by Carifio and Nasser (2012) researched how elders’ beliefs in a just world informed
their coping with anxiety, fear, and life transitions. Those who scored high on belief in a just world
scored low on depression, and vice versa.
There is a need to study the social impact of nursing research (Bradbury-Jones & Taylor, 2014)
using social justice concepts. Yet, few nurse researchers explicitly focused on an inquiry about
social justice impact or outcomes. Barnes (2016) measured social justice as an outcome concept
to understand if service learning, as a teaching modality, was an effective way to teach the concept. Messias, McDowell, and Estrada (2009) highlighted how social justice concepts were useful
while practicing language interpreting. Organizational justice, a specific feature of social justice,
was measured to understand how it moderated the effect of organizational support and citizenship behaviors among nurses (Chang, 2014). Additionally, Walker (2017) conducted a grounded
theory study to understand critical processes by which nurses develop their understandings
about social justice. Walker (2017) noted that nurses employ becoming, awakening, engaging,
and transforming processes, and relational and reflexive conditions to determine their engagement in social justice. More researchers identified how the concept of social justice was used in the
research process (Guo & Phillips, 2006; Mohammed, 2006; Racine, 2002; Tee & Lathlean, 2004) in
the United States and globally (Bathum, 2007). Reimer-Kirkham (2014), for example, used social
Literature Search Methodology
45
justice to critique nursing research on religion and spirituality. It was noted how social justice can
showcase assumptions related to religious or spiritual neutrality, universality, and discrimination
(Reimer-Kirkham, 2014).
Overall, social justice is infrequently defined as a framework to guide nursing research or as a
theory to develop research instruments to assess values (Weis & Schank, 2009). Social justice is a
rare measurement concept in inquiry (Rodwell, Noblet, Demir, & Steane, 2009). However, a growing number of researchers state the social justice implications for their research (Andrews & Heath,
2003; Lynam et al., 2003).
Views of Justice in Nursing Practice Articles
Articles about how justice relates to nursing practice focus on how ethics is useful in making moral
judgments about the care of individuals or populations (Baisch, 2009; Bell, 2003; Hildebrandt &
Ford, 2009; Lawson, 2005; MacKinnon, 2009; McMurray, 2006; Peter & Morgan, 2001; Phillips &
Phillips, 2006; Pieper & Dacher, 2004; Purdy & Wadhwani, 2006; Stinson, Godkin, & Robinson,
2004; Turkoski, 2005; Williams, 2004). Clients of focus include, but are not limited to, elder (Dong,
2016), mental health (Pearson et al., 2015), and palliative care (Pesut, Beswick, Robinson, & Bottoroff, 2012) and culturally diverse populations.
There is a small and growing number of articles that explore how the practice of nursing promotes discrimination. This includes a focus on ageism among nurses (Kagan & Melendez-Torres,
2015), heterosexism and homophobia (Nhamo-Murire & Macleod, 2018), and colonizing practices and processes of nurses (McGibbon, Mulaudzi, Didham, Barton, & Sochan, 2014). Justice is
also viewed as a concept to guide nursing administration and leadership (Curtin & Arnold, 2005a,
2005b; Waite & Brooks, 2014; Williams, 2006), nursing practice (Bell & Hulbert, 2008; Falk-Rafael,
2005; MacKinnon, 2009; Sutton, 2003), and healthcare management (Williams, 2005). Crock (2009)
is one of few authors to focus on how nursing practice is increasingly connected to and lured by
organized power in other disciplines.
When used in clinical nursing practice, justice is often defined as treating people fairly. Justice is also viewed as a social obligation for nurses to understand how practice is influenced by
assumptions and social inequalities that guide the design of health care and society (Benner,
2005; Drevdahl, 2002; Ervin & Bell, 2004; Leung, 2002; Ludwick & Silva, 2000; Russell, 2002).
Most authors agree that discussions of justice are needed to assess how the work of individual
nurses and the profession contribute to the formation of a just healthcare system and society
(Haddad, 2002).
Despite the recognition that exploring justice is needed, most articles on this topic do not
define justice beyond notions about fairness. Alternatively, if justice is defined more elaborately in
relationship to nursing practice, authors often use a distributive justice framework (Silva & Ruth,
2003). Authors using a distributive justice viewpoint assert that all persons have equal political
and social access to opportunities. The belief that persons are equal forms the basis for the even
allocation of goods and services. A main limitation of the distributive view of justice is the lack
of acknowledgment that social groups are often regarded unequally based on gender, class, and
race; thus, the allocation of goods and services is also unequal in U.S. society (Young, 1990). Even
fewer authors use social justice as a lens through which to view how nurses practice in unjust
healthcare settings (Anderson et al., 2009). Few authors acknowledge the limits of the distributive paradigm or focus on educating nurses to change laws, public institutions, and communities
to promote social justice.
46
Chapter 4 Social Justice in Nursing: A Review of the Literature
▸
Social Justice: Definitional Limitations
in the Nursing Literature
There are three main concerns with definitions of social justice in nursing. First, social injustice is
viewed as a result of a personal act, and justice is an individual response to that act. This assumes
that justice can be achieved by multiple individual acts, as opposed to institutional changes and
reform processes. The individualization of social justice is historically related to how nurses conceive the person as the primary site of, and remedy to, unjust conditions. Rarely is it highlighted
how injustice nationally or globally (Austin, 2001) is created by power imbalances in the distribution of wealth, resources, and access. Moreover, seldom is it acknowledged that the unequal distribution of resources and access influences healthcare delivery, health status, and health actualization
or achievement of optimal health.
The second main concern with publications about social justice in nursing is the way social
justice is presented. Lipscomb (2011) noted that social justice claims are inadequately detailed in
the nursing literature. Social justice is asserted by authors as a result without adequate evidence
that their theories or practices promoted social justice. Social justice is a popularly used phrase in
most publications without substantiation.
Third, authors writing about social justice in nursing limit the focus to populations created as
underrepresented or vulnerable (Herman & Sassatelli, 2002; Redman & Clark, 2002). In the last
decade, however, the focus has changed to the practices of nurses in terms of enabling or limiting
justice. That is, more nurses are questioning how the nursing profession is creating health vulnerabilities in clients versus providing protective health and well-being care. Nevertheless, nursing literature rarely addresses how inequitable conditions contribute to diminished health actualization
in majority groups as well. Deaton and Lubotsky (2003), for example, determined that death rates
in U.S. states with more income inequality were higher for all groups than the corresponding rates
in states with more equal income distributions. After considering the racial and ethnic composition
of those states, it remained unclear why the mortality of the majority group of White Americans
was related to racial composition and income inequality (Deaton & Lubotsky, 2003).
There is also a tendency to compare health indicators of people of color to White Americans,
even though White Americans as a population may not experience the best health outcomes nationally or globally for certain conditions. Thus, the standard reference to White Americans, without
considering the best population health indicators more globally or broadly, may promote reference
comparison bias. In part, this bias exists because of the lack of research into how inequality contributes to poor health outcomes for both minority and majority members of society. Despite this
consideration, some literature suggests that injustice lessens the presence of optimal health for all
(Subramanian, Blakely, & Kawachi, 2003). Even on a global level, poor environments foster poor
health locally and nationally (Subramanian et al., 2003).
Considerations such as this remain underdocumented in the nursing literature for several
reasons. Most nurses have a limited view of social justice (Drevdahl, 2002) and inadequate social policies to guide their depth of thinking about social justice (Bekemeier & Butterfield, 2005;
Kikuchi, 2004). When justice is defined in relationship to individual equality and fairness, the institutional policy, practice, and accountability dimensions of justice and injustice are also minimized.
Fairness and equality are not the same concepts. Given the historical disadvantages encountered
by underrepresented groups in the United States, for instance, to give equal treatment would not
remedy current or past ills.
Social Justice Awareness, Amelioration, and Transformation
47
Social justice asserts that persons created as vulnerable should be protected from harm and
have opportunity protections to enable the achievement of desirable health and life outcomes in
society. The dynamics of being perceived as privileged or vulnerable require further exploration.
Particularly relevant would be an investigation of how nurses are influenced by privilege as they
espouse their role as social justice advocates. One question becomes critical for that type of research
to flourish: Can nurses really promote a social justice agenda when that promotion will result in
the critique and dismantlement of our own advantage?
Social justice critique means, for example, that you must recognize the social factors that construe persons as privileged or vulnerable at different points in time and in different places. A social
justice agenda necessitates transforming systems that promote subordination or disadvantage in the
long term and the immediate conditions that limit self-actualization in the short term (Kirkham &
Anderson, 2002). It requires a consistent focus on understanding how concepts are developed to
limit or promote justice (Lutz & Bowers, 2003). The focus on multiple simultaneous sites of social
justice action is needed to address the short- and long-term oppressive situations that create social
injustice and limit access to health and health care. A multifocal approach to social justice is needed
but as yet has not been fully articulated in the nursing literature.
▸
Advancing Nursing Using Social Justice Complexity
Definitions of social justice vary across disciplines and over time. Theories about social justice are
espoused in philosophy (Young, 1990), public health science (Beauchamp, 1986), and religious studies (Lebacqz, 1986). The use of social justice by nurses as a research framework gained momentum
in the early 1990s with the application of womanist, feminist, and social critical theories (Boutain,
1999), in the late 1990s with the use of postcolonial perspectives (Kirkham & Anderson, 2002), and
in the early 2000s with a focus on indigenous knowledge creation. Authors who use critical theories to critique nursing education, research, and practice help guide the nursing profession toward
a social justice agenda. Unfortunately, many of these works were not developed to give explicit
attention to the multiple ways of understanding social justice as a concept.
One useful framework for nurses to consider is based on the work of Holland (1983). This
chapter advances the work of Holland to explore how social justice is considered in addressing
injustice on many fronts. Specifically, scholars must deal with the antecedents of injustice, the
processes of injustice, the results of injustice in society, and the creation of equitable institutions.
These stages of injustice creation and re-creation will help focus nursing on points of intervention. Nurses can then address social justice in terms of social justice awareness, amelioration, or
transformation.
▸
Social Justice Awareness, Amelioration,
and Transformation
Social justice awareness entails exploring how you perceive others as vulnerable or privileged. Awareness involves asking critical questions about how systems of domination and oppression foster categorizations such as “vulnerability” and “privilege.” An example may be helpful in understanding
social justice awareness.
48
Chapter 4 Social Justice in Nursing: A Review of the Literature
Homelessness is a major health and social concern. A focus on social justice awareness may
involve conducting a self-interview and client interview on how housing influences health. For
example, think about how health is related to housing. Write your thoughts prior to interviewing
clients with and without a home. Talk with clients who have homes and those who do not. Ask
them about how having or not having a home influences their health and record their point of view.
Conduct a literature review on housing, home ownership, and health. Questions to consider
include these: How does having a home relate to health? What is the health status of those who have
homes? What is the health status of those who do not have homes? Compare your initial thoughts
to the knowledge gained in the interview and review of relevant literature. You may discover that
your awareness of the relationship between housing and health increases.
Social justice awareness is an ongoing process. To alter the analogy described by Lebacqz (1986),
injustice is similar to a proverbial elephant standing right next to you. You cannot appreciate the
entire view, and you may not fully recognize how you are affected by or are affecting the elephant.
You must continue to move, sensing each part of the elephant at different angles and with different senses. Social justice awareness is temporal and dependent on your frame of reference. Being
aware is a start, but it is not enough.
Social justice amelioration involves addressing the immediate results or antecedents to unjust
conditions. To continue with the example of health and homelessness, amelioration entails a direct
attempt to address the situation of the clients who are homeless. How that situation is addressed,
however, is often to treat the most immediately seen concerns of a person experiencing homelessness. Accruing grants to provide temporary shelter, food, clothing, or health care to the homeless,
for example, is an illustration of social justice amelioration. In the short term, amelioration remedies urgent or semi-urgent concerns, but it does not really change the conditions that will create
others as homeless over and over again.
Social justice transformation also involves critically deliberating about the conditions of
home dwelling and homelessness in relation to health to proactively change those conditions.
Who are the people most likely to have homes? Which conditions were present that allowed them
to have homes? Who are the people most likely to be homeless? Which conditions led them to
become known as homeless? How does housing relate to health services allocation, current health
status, or future health attainment? Social justice transformation advocates seek to answer these
questions as part of their attempts to change or develop just housing and health policies. Their
aim is to eliminate or limit the conditions that result in homeless. Social justice transformation
is devoted to redressing unjust conditions by changing the structures that foster those unjust
situations. Transformation focuses individual actions toward long-range systematic solutions
to unjust situations.
The work of Iris Young (1990) is helpful in further understanding social justice transformation.
She argues that distributive justice (similar to social justice amelioration) is based on a false system
of distributing services and rights to those who are already made to be marginalized because of
social injustice. Thus, the rendering of service re-creates the system of privilege by reinforcing those
who give the services (the privileged) to remain in a position of power over those who receive those
services (the needy). In the short term, this strategy addresses the immediate needs of those who
were already made to become vulnerable; in the long term; however, the system does not change
because those privileged few in power maintain their positions. Young believes it is most helpful
to restructure systems so that certain services, such as homeless shelters, are needed only infrequently or are no longer needed. System restructuring is accomplished by recognizing, confronting, and diminishing entrenched inequalities associated with gender, class, and racial inequalities
in society (Young, 1990).
References
▸
49
Conclusion
A social justice agenda recognizes both the privileged and inequitable organization of social groups
based on how the ways of being, ways of understanding, and ways of governing are operationalized
in society. These ways have underlying values that support the distribution of power and resources
to social groups—to construct both the privileged, marginally privileged, and underprivileged.
Social justice gives moral privilege to the needs of the most vulnerable group to promote justice
within the society at large. As vulnerability among persons is eliminated or minimized, the moral
agency of those privileged can be simultaneously elevated. This view of social justice is not clearly
articulated in the literature on nursing education, research, and practice, however.
Discussions about social justice remain conceptually limited in the majority of published works
in nursing. Without a more complex and nuanced view of social justice, nurses are less able to fully
utilize this concept as a framework to redress unjust conditions in healthcare attainment and delivery. Social justice is regarded as central to the nursing profession, despite the need to critically revisit
discussions about this concept. Nurses can contribute much to understanding how the interdisciplinary concept of social justice is useful in promoting health and social relationships in society.
▸
Acknowledgments
Support for the first edition of this chapter was provided by grants from the National Institute of
Child Health and Human Development (HD-41682); the National Institute of Nursing Research
(F31 NR07249-01); and the Centers for Disease Control and Prevention (U48/CCU009654-06).
Support for the second edition of the chapter was provided by National Institute of Child Health
and Human Development (HD-41682), an Intramural Award from the University of Washington
School of Nursing, and Community Award from the March of Dimes. The University of Washington School of Nursing supported the funding of the third and fourth chapter editions. The John and
Marguerite Walker Professorship in Public Service from the University of Washington supported
the fifth edition chapter revisions. The author wishes to thank Joseph Fletcher, III.
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CHAPTER 5
Health Literacy: Through
the Lens of One Provider
Pamela H. Ograbisz
OBJECTIVES
At the end of this chapter, you will be able to:
1. Define and understand health literacy.
2. Compare and contrast the different meanings and interpretations of health literacy through
case studies.
3. Provide examples of how health literacy can be addressed across the healthcare continuum
with new technology and advancements in healthcare communication techniques.
▸
Introduction
In this chapter you will learn about health literacy, a vital concept in modern health care in which the
patient is much more involved in health and treatment decisions. The end of the chapter provides
case studies that demonstrate how health literacy applies to the real world.
▸
The Definition
According to the Centers for Disease Control and Prevention (CDC), the Patient Protection and
Affordable Care Act of 2010, Title V, defines health literacy as the degree to which an individual
has the capacity to obtain, communicate, process, and understand basic health information and
services to make appropriate health decisions (CDC, 2017).
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
55
56
▸
Chapter 5 Health Literacy: Through the Lens of One Provider
The Statistics
According to the National Center for Education Statistics (NCES), the Program for the International
Assessment of Adult Competencies (PIACC) provides the most current indicator of our nation’s
progress in adult skills in literacy. In 2016, the PIACC released data showing that the United States
had the largest number of adults scoring at or below a Level 1 in literacy proficiency. Only 12 percent of U.S. adults scored a Level 5. which is the highest literacy proficiency level (NCES, 2017).
■
43 percent of adults at Level 1 literacy skills live in poverty compared to only 4 percent of those
at a Level 5.
Three out of four food stamp recipients demonstrate Level 1 and 2 literacy skills.
Low literacy levels cost $73 million per year in direct healthcare costs.
▸
A Glimpse at the Problem
■
■
When my oldest daughter was 9, she received a Rubik’s Cube. She quickly opened it, turned the sides
in a million different directions, and prepared to conquer it. After 25 minutes of minimal progress,
she grabbed an iPad, pulled up a YouTube video, and proceeded to solve the puzzle. I was surprised
that a video could provide such detailed instructions and decided to try it myself. I took her now
perfect cube, rotated the sides, and continued with the experiment. It did not go well. I followed
the tutorial, but I was never able to achieve getting the six faces back to their solid primary colors. It
was beyond frustrating. How could a 9-year-old master this process so quickly? As a well-educated
professional, I was baffled. Why could I not “understand” what the video was telling me? I knew
what had to be done, but I could not execute the process.
The following week I had a follow-up appointment with a patient who I had been treating for
diabetes. He was supposed to bring me his blood sugar log and keep a food journal with his carbohydrate counts and portions so that we could make changes to his regimen. When I asked for
the log, he sheepishly looked at me and said, “I didn’t do it. I checked the sugars and I wrote them
down, but I just didn’t understand the carbohydrate counting and the food exchanges. It was just
too complicated for me.” For a moment I thought, How could he not understand? I gave him an
overview and all the handouts . . . but, then I remembered the dastardly cube. It was the same.
The treatment of medical conditions is second nature to me, but a foreign subject for my
patient who is an accountant. In areas where we are novices and new situations present themselves,
it behooves the user to receive training and feedback. Perhaps if someone had shown me a different way, took the time to explain the steps, and ensured that I understood the process, the outcome
for solving the cube would have been different. Confidence in your ability to perform skills translates to improved results. This is true of solving puzzles, and it is true of being comfortable with
understanding your medical needs.
▸
Defining the Problem
Over the years I have provided care to clients who had great difficulty understanding why they were
ill and what led to their hospitalization or new diagnosis. The patient is often blamed and labeled
uncompliant or resistant to change. However, as we look deeper it is evident that both poor health
literacy and low levels of reading literacy are underlying factors for the lack of ownership in their
own care. Using the printed word with accuracy and consistency is difficult for a large portion of the
population and is not the same thing as being illiterate. Functional health literacy requires people to
Case Studies
57
comprehend the written word and “both educators and economists agree that when this is not achieved
we have far reaching complications in health, civic society, economic policy and agency” (Rudd, 2014).
Aa a nurse practitioner, I know the importance of preventive health care. Lack of adherence
to prescribed therapies, late stage–seeking of treatment for chronic conditions, and misunderstanding of one’s overall health can have disastrous impacts on patients and the healthcare system.
According to the CDC, 86 percent of all healthcare spending in 2010 was for people with one or more
chronic medical conditions (CDC, 2017). Our current teaching tools and methods are not geared
to the public. As providers, we speak in abbreviations and assume that we are clarifying the medicines and procedures that we are recommending. However, the complexity of our language coupled
with medical ambiguity leaves patients confused and frustrated. Tight schedules leave little time
for clarifying questions, and patients feel disengaged and unmotivated to participate in the process.
▸
New Trends
There have been many evolutions in healthcare systems for interacting with information over the last
10 years, the most significant being the adoption of electronic medical records, which have providers
and patients relating in new ways. Patient portals allow for access to labs and tests and enable the client
to email the health care team with questions or concerns. However, what happens to those with limited access to computers or the Internet? A basic knowledge of how to use a computer is required and
navigating the sign-up procedures and log-in requirements can be overwhelming (Tieu et al., 2017).
At the end of an office visit or hospitalization patients are discharged with reams of papers
documenting medical conditions, medications, follow-up appointments, and reminders to access
their patient portal to communicate with their providers. How does the average layperson make
sense of all of this information? Technology is supposed to improve the way we relate to our patients
and provide fluid transitions, but is this the case? Have we addressed the gap in health literacy by
assuming that our patients are computer literate and that this will fix the issues?
The practice of medicine has undergone a surprising transformation. Appointments used to be
30 minutes, and there was time to ask questions and clarify needs. When clients called the office, they
spoke to the same person who knew them and their history without having to pull their chart. Lab
results were discussed in person and computers were only used for scheduling. Medicine and the way
in which we practice it has evolved, and not everyone approves. A profession in which face-to-face
interactions and personalization of care used to be the mainstay has changed. Providing more information and greater access to personal health information is a wonderful gain, but if the patient does
not understand how to interpret the data or access the system, we are not accomplishing our goals.
▸
Case Studies
CASE STUDY 51: EDGAR AND LILLY
Edgar and Lilly have been married for 20 years and have three children between the ages of 7 and
15. They have resided in the same rural town their entire lives where Edgar works as a mechanic in
a family-owned garage, and Lilly is a waitress at the local diner. Neither of their jobs offers health
insurance so they only go to the doctor when they are ill, and they do not participate in preventive
(continues)
58
Chapter 5 Health Literacy: Through the Lens of One Provider
CASE STUDY 51: EDGAR AND LILLY
(continued)
healthcare maintenance. The children are covered by a state-funded program and attend a clinic for
their primary care needs and required vaccinations.
Lately, Edgar has been experiencing chest pain and shortness of breath with minimal activity. Lilly
convinces him to go to the self-pay clinic that is an hour away in the next town to be evaluated. The
provider performs a physical exam and a 12-lead electrocardiogram (ECG), which shows ST-segment
elevations indicative of a myocardial infarction, or heart attack. The provider wants to call an ambulance
and have Edgar immediately transferred to the hospital for treatment. Lilly and Edgar are overwhelmed
and very worried about how they will pay the hospital bill without insurance. The provider’s staff
reassures them that the hospital will work out a payment plan and convinces them to go.
Edgar is admitted to the cardiology service at the metropolitan hospital center, which is
90 minutes away from their hometown. It is determined that he requires open heart surgery owing to
multiple blocked heart vessels. He spends 8 days in the hospital and is released on five new medications,
has three follow-up appointments with various doctors, cannot drive for 6 weeks, and cannot work for
3 months. When Lilly goes to fill the prescriptions, she can only afford two of the five so that is all that
she purchases. She tells the pharmacy tech when she checks out that she will pick up the others after
she gets paid in a few days. After being home for 5 days Edgar develops chest pains and collapses in the
kitchen. The couple’s youngest child finds him and calls 911. When they arrive, they find him unresponsive
and begin performing cardiopulmonary resuscitation (CPR). He is transferred to the closest emergency
department where it is determined that he has suffered from a re-occlusion of his arteries and has
experienced a stroke. Edgar never regains consciousness and his family withdraws support 2 days later.
The Breakdown
Lilly and Edgar represent many families across the United States. Although he had superior medical
care once diagnosed with his heart attack, his family did not understand the information sufficiently
to gain a true appreciation of his condition and how it evolved. They received detailed explanations
prior to the procedures delivered in the hospital along with education on lifestyle changes and
postoperative care, but was it tailored to the patient or his family? The handouts on his medications
and follow-up appointments were generic and printed from the electronic medical record. While the
nurse did review the medicines and their usage, did anyone take the time to find out if the family
would be able to afford the regimen of medications or if they truly understood the importance of
Edgar taking all of them without interruption daily? Did Lilly realize that the medicines were designed
to work together to keep the blood pressure controlled and blood flowing freely in the newly grafted
vessels to prevent clots and a possible stroke?
The Evolution of Vulnerable Populations When It Comes
to Health Literacy
Limited health literacy is not a condition that affects only the poor or uneducated. You cannot assume
that your patient understands the instructions or scenarios unfolding based on race, demeanor, or
socioeconomic status. Health literacy depends on the context. Despite having solid literacy skills, even
well-educated clients can face challenges, such as when:
■
■
■
■
They are unfamiliar with medical terminology or basic bodily functions.
Statistics and/or interpretation of figures are required to render a healthcare decision.
A diagnosis of a complex illness with serious consequences is given and they become scared,
nervous, or confused.
They or a loved one develops complex conditions that require complicated self-care.
Case Studies
59
CASE STUDY 52: AMELIA
Amelia is a shy, bright, 11-year-old who was looking forward to Christmas vacation and her
competition basketball season. A week before school was to let out for break she became ill with
a fever, body aches, and chills and was diagnosed with the flu by her pediatrician. However, after
several days of medications and rest she was struggling to breathe and her chest felt tight. A quick
trip to the urgent care and a chest X-ray revealed that she did not seem to have the flu, but a nasty
case of pneumonia. Amelia and her mother, Mary, were transported to the local children’s hospital
by ambulance and admitted to the floor for observation and intravenous antibiotics. The situation
continued to deteriorate as her oxygen levels declined and her lips turned blue. Monitors were
continuously beeping and respiratory therapists, nurses, and doctors rushed in and out of her room to
help stabilize her. Nebulizer treatments were given, medications administered, supplemental oxygen
applied, and then another chest X-ray was taken and showed an empyema (a pocket of pus in the
pleural cavity caused by bacteria).
The Intervention
Her mother and father were concerned as the hospitalist discussed the need to move Amelia to the
intensive care unit and place a chest tube in her side to drain the collection. It had to be done right
away and it would be painful. They looked at their child and knew that she needed help, but they
were overwhelmed with the information and the sudden turn of events. Should they consent to the
procedure, even though it carried many significant risks, which were rattled off quickly, some of which
they did not understand? Maybe they should get a second opinion for treatment? The clock was
ticking and they needed to act.
Struggling to Understand
Looking back on the incident, Mary reflects that she was surprised by the intensity and stress of
it all. “My husband and I both have college degrees, are well read and at the top of our respective
fields in business, but the language that was being spoken to us that day and every day after
was foreign. We had no idea if what they were suggesting was correct, so we had to trust in their
expertise and go on blind faith. I was armed with a pad of paper and pen at all times to write
down my questions and keep track of the answers, even though many times the answers just
raised more questions.”
It wound up being a 2-week stint in the hospital, with several more respiratory emergencies.
Amelia lost 18 pounds, was terrified of taking a deep breath, and was anxious upon her discharge. She
had tons of follow-up appointments, medications, special machines for breathing and coughing, and
all of it had to be done on a schedule. “It took three carts to get us from her hospital room to the car
and once we were home and unloaded, I didn’t know if I could do it,” said Mary. “The information sheets
that were provided at discharge were a confusing string of terms, medicines, and appointments. I had
to make a spreadsheet to keep track of it all.
“One saving grace was our decision to call a trusted friend, who is a medical provider, after
Amelia was sent to the hospital from the urgent care. We knew that we needed expert guidance
outside of our healthcare team to answer all the questions that we had forgotten to ask when the
doctor was in the room. She became a sounding board for us and gave us reassurance when things
got dicey and the days dragged on. I call her my medical translator. When I didn’t understand
the why and the how of what was being done, she was there to help us sort it out, and once we
came home, she helped us know what was normal and prevented us from having to return to the
emergency room.”
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Chapter 5 Health Literacy: Through the Lens of One Provider
TABLE 5-1 Comparison of the Two Cases
▸
Edgar and Lilly
Amelia
Inadequate resources for medicines and
therapies following surgery
Delay in treatment of underlying condition despite office
visit and initial treatment of presenting symptoms
Inability to truly understand the
complexity of the medical situation
at hand
Difficulty understanding the complexity of the medical
situation at hand
Confusion regarding procedures and
discharge information
Confusion regarding procedures and discharge
information
Hardship of medical facilities being
> 60–90 minutes from their home with
multiple follow-up appointments
Hardship of multiple follow-up appointments that are
> 30–60 minutes from their home
The Overview
When we compare these two cases it would be simple to say that one had a devastating outcome
and one did not. Or that the primary difference is that one family would be considered poor with
limited resources while the other has ample access to providers and treatments. However, when
you apply the broader concept of the health literacy lens to both cases you can see that there are
similar issues plaguing both families.
The resounding parallels in these cases is the need for more clarification and education. Using
a screening tool for health literacy would have demonstrated the necessity for intervention with
both families. While Amelia’s parents may be at a Level 5 literacy rate, they still had great concern
and confusion regarding interventions and therapies. Improved communication between the staff
and the parents could have avoided the need for them to seek outside guidance and given them
greater confidence during the process of the illness. A quick evaluation of Edgar would have revealed that his literacy level was between a 2 and 3 and that his capacity to process complex medical information and make appropriate and informed health decisions was lacking. Dispatching a
patient advocate to help him navigate the process and ensure that his needs both during and after
the hospital stay were met could have prevented his tragic outcome. A dear patient once told me,
“If I don’t know the questions to ask, how am I supposed to get better or do what I am supposed
to?” How indeed!
▸
The Smartphone Evolution in Health Literacy
As providers, the use of effective communication is an essential key to the formation of trust among
clients. When patients have a clear understanding of the expectations and anticipated outcomes,
it can yield positive results. Greater access to healthcare teams where clarifying questions can be
Conclusion
61
asked and answered and patients can be seen at a moment’s notice would help to bridge the gap.
So, how do we accomplish this goal? We must look toward digital communication.
One such model that is embracing borderless and on-demand care is the Virtual Clinic platform at the University of Southern California (USC). They are experimenting with a concept
that renders more flexible health care through digital innovation (Peden & Saxon, 2017). Their
patients do not have to present to a brick-and-mortar location. Instead they can receive real-time
care when they need it.
Since so many patients struggle with access to care for a variety of reasons (transportation,
hours of clinics, lack of proper coverage, etc.), this would enable clients to tap into care from anywhere at any time utilizing a smartphone. According to the 2016 World Development Report, more
people in the world have access to mobile phones than they do indoor plumping or clean water
(World Bank, 2016). So, even the poorest patients can obtain technology that is handheld, always
with them, and easily connected to the Internet or Wi-Fi. Enabling applications that are designed
to interact with patients who have known low levels of literacy would allow clients to use pictures
and images to communicate their problems more effectively with their healthcare team. The goal
of the USC clinic is to construct a virtual experience for patients, caregivers, and medical professionals to provide on-demand services anywhere at any time to anyone using a variety of digital
modalities (USC Center for Body Computing, 2017). Combining this technology with a tele-health
model whereby patients and providers can see each other and interact across the screen would allow
for better communication as well.
▸
Conclusion
Addressing health literacy is a crucial public health initiative. Effective and purposeful communication between all members of a healthcare team is essential to success. Everyone involved in the
patient’s care must be able to speak efficiently and respectfully about the patient’s conditions and
take the time to gauge understanding. In my personal experience, I often ask the client to recap the
plan for me prior to the end of my visit so that I know we are on the same page.
The World Health Organization (WHO) has estimated that “if the major risk factors for
chronic disease were eliminated, at least 80 percent of all heart disease, stroke, and type 2 diabetes would be prevented, and more than 40 percent of cancer cases would be prevented” (WHO,
2005). We can achieve this dream. Health care must shift its focus and our patients need to be
empowered and take ownership of their care, but they can only do so if they are involved in the
process on a level that makes sense to them. While we wait to see if virtual and tele-health clinics can become widely accessible, we will need to make appropriate adjustments in our own practices to curb the deficit.
The CDC offers six online health literacy courses for health professionals. They discuss how
to communicate in plain language and review writing and speaking with the public. This is a great
place to start to tackle our gaps and reinforce tactics that will help us achieve a healthier population. It all begins with us; the providers on the front lines.
Link for the CDC training module for health literacy: https://cdc.train.org/DesktopModules/eLearning
/CourseDetails/CourseDetailsForm.aspx?courseid=1057675
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Chapter 5 Health Literacy: Through the Lens of One Provider
References
Centers for Disease Control and Prevention. (2017). Health literacy. Retrieved from http://www.cdc.gov/chronicdisease
/overview/
National Center for Education Statistics. (2014). Adult literacy in America. Retrieved from https://nces.ed.gov/
National Center for Education Statistics. (2017). Program for the international assessment of adult competencies. Retrieved
from https://nces.ed.gov/
Peden, C. J., & Saxon, L. A. (2017). Digital technology to engage patients: Ensuring access for all. New England Journal of
Medicine Catalyst. Retrieved from https://catalyst.nejm.org/digital-health-technology-access/
Rudd, R. (2014). Health literacy research findings and insights: Increasing organizational capacity for shaping public health
messages. Retrieved from https://www.cdc.gov/healthliteracy/learn/
Tieu, L., Schillinger, D., Sarkar, U., Hoskote, K., Hahn K. J., Ratanawongsa, N., . . . Lyles, C. (2017). Online patient websites
for electronic health record access among vulnerable populations: Portals to nowhere. Journal of the American Medical
Informatics Association, 24(1), 47–54.
University of Southern California Center for Body Computing. (2017). Virtual care clinic. Retrieved from https://www
.uscbodycomputing.org/virtual-care-clinic-2/
World Bank. (2016). World development report. Retrieved from http://documents.worldbank.org/curated/en/896971468194972881
/pdf/102725-PUB-Replacement-PUBLIC.pdf
World Health Organization. (2005). Preventing chronic diseases: A vital investment. Retrieved from http://www.who.int
/chp/chronic_disease_report/full_report.pdf
CHAPTER 6
Bullying
Pamela J. Evans and Mary de Chesnay
OBJECTIVES
At the end of this chapter, you will be able to:
1. Define bullying and identify key characteristics.
2. Recognize bullying of children has long-term consequences.
3. Understand that policies alone do not fill the gap in intervention.
▸
Introduction
The nature of bullying speaks to the heart of vulnerability in that the strong prey on the weak.
Although bullying can occur within a variety of contexts, this chapter focuses on the bullying of
children because when young children are bullied, they carry the stigma throughout their lives, and
the long-term consequences have serious implications for their future behavior.
To proactively provide a safe learning environment and ensure the long-term welfare of our
children in the public school system, we must scrutinize all elements of violence taking place in our
schools. There is no escaping the gruesome headlines from Sandy Hook Elementary to Parkland
High School. The images are forever burned in our minds: the senseless loss of children, grieving
parents, educators, and families. During the 1960s, 1970s, 1980s, and 1990s the level and rate of
school violence has escalated from 10 to 30 deaths per year to an all-time high of 256 deaths between 1990 and 2000 (“History of School Shootings,” 2018). It has become an everyday tragedy
in this country and parents worry about sending their children to school, and they should worry.
Research shows alarming statistics about bullying and its long-term consequences. About 40 percent of school shooters studied by psychologists, some after the fact, had experienced bullying
(Langman, 2018). Some victims of bullying don’t just become homicidal; up to 25 percent of children bullied become suicidal (Copeland, Wolke, Angold, & Costello, 2013). Until we can understand the dynamics of bullying, we will continue to fail to intervene effectively.
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Chapter 6 Bullying
This chapter is a review of the current literature on bullying in order to define bullying and
its key characteristics, to recognize long-term consequences of bullying, and to understand that
policies alone do not fill the gap in intervention. Understanding the predictors of bullying in the
early years may be critical to breaking a cycle of bullying that can perpetuate through adolescence
(Fink & Wolpert, 2018). Bullies grow up to bully as coworkers, managers, and spouses. Whether a
victim or a bully or both, there are lasting psychological implications.
The literature reveals some consequences of bullying and long-term effects on all three
groups. Statistics about the occurrence rate of bullying range from 32 percent to 80 percent, depending on the source. Note that other sources cite about 37 percent of adults have been bullied in
the workplace as well (Magnuson & Norem, 2009).
▸
Definitions
Bullying
The Centers for Disease Control and Prevention (CDC) defines bullying as any unwanted aggressive behavior by another youth or group of youths who are not siblings or current dating partners
that involves an observed or perceived power imbalance and is repeated multiple times or is highly
likely to be repeated. Bullying may inflict harm or distress, which may be physical, psychological,
social, or educational (Kub & Fieldman, 2015). Bullying comes in many forms: name calling, hitting, tripping, teasing, or social bullying whereby the victim is excluded, ostracized, or is the
subject of rumors, and because of the technological age we live in many are victims of cyberbullying. Cyberbullying can take place through email, chat rooms, instant messaging, texting, videos,
pictures, and website posts.
Victim
A victim is a person harmed, injured, or killed because of a crime, accident, or other event or action.
Synonyms are sufferer, injured party, casualty, injured person, wounded person, fatality, loser. Characteristics of bullying victims include a low self-esteem, a negative cognition about themselves and
their situation, depression, and negative attitudes about their school. Victims of bullying may be
targeted for physical appearance, weight, glasses, braces, disabilities, hair color, academic difficulties, or odd behavior such as autism (Kub & Fieldman, 2015).
Bully
A bully is a person who uses strength or power to harm or intimidate those who are weaker. Synonyms are persecutor, oppressor, tyrant, tormentor, browbeater, intimidator.
A bully may be physically larger, stronger, older, more popular, or the product of harsh family
environments or harsh punishment. They perform poorly academically and have a tendency toward
truancy, drinking, and smoking, and many will become high-school dropouts. They often try to
control the victim by bullying; taking money, lunch, shoes, or other belongings; or physical assaults.
Bully-Victims
Bully-victims are often born after being repeatedly bullied. As a result, they attempt to regain a
sense of power in their lives. The victims they target are usually more vulnerable than themselves,
Characteristics
65
which allows them to feel powerful and in control. Bully-victims are more common than you might
think. Many bullies have also been victimized themselves. Bullying other kids is a way for them to
retaliate for the pain they experienced. Other times, bully-victims come from homes filled with
domestic violence. Or they may suffer abuse at the hands of an older sibling. In these cases, bullying is a learned behavior. Most bully-victims are typically loners or are at the bottom of the social
ladder at school, which contributes to the bully-victim’s sense of powerlessness and anger. As a result, they often appear hostile, which keeps them in a position of low social status and perpetuates
the bully-victim cycle. Characteristics of bully-victims often include the following: they suffer more
psychological stress, have trouble fitting in (socially isolated), struggle in school, cannot manage emotions, respond to stress aggressively, and experience the consequences of both bullies and victims.
▸
Significance
As nurse practitioners, educators, and parents we should be very concerned that up to 25 percent
of children bullied become suicidal (Copeland et al., 2013). About 70 percent of middle- and highschool students have experienced bullying at some point, and 40 percent of school shooters were
bullied (Langman, 2018). Bully victims report the highest level of suicide thoughts at 24.8 percent
versus 5.7 percent in young adult nonbullied students (Copeland et al., 2013)
▸
Characteristics
Characteristics of victims include a low self-esteem, a negative cognition about themselves and their
situation, depression, and negative attitudes about their school. Victims of bullying may be targeted
for physical appearance, weight, glasses, braces, disabilities, hair color, academic difficulties, or odd
behavior such as autism (Kub & Fieldman, 2015). Victimized youth are at an increased risk of depression, anxiety, sleep difficulties, somatic complaints—such as headaches, neck pain, stomachaches, anxiety, and fatigue—and poor school adjustment (Perron, 2013).
These behaviors may continue into adulthood, along with poor self-image, insecurity, blaming others for their problems, and attempting to control others (coworkers and spouses). Female
bullies are more likely to engage in relational aggression rather than physical by spreading rumors,
revealing secrets, and facilitating social exclusion and silent rejections (Kub & Fieldman, 2015).
These bad behaviors do not cease to exist in adulthood especially if the bully has learned to get his
or her way through bullying.
Some researchers think that bully-victims were victimized first and then began to bully for
survival purposes (Perron, 2013). This group of youth is at a higher risk of suicide than victims
or bullies alone. When we consider bullying we naturally feel compassion and sympathy for the
victim, but the highest risk for suicide is actually the bully-victim. In the long term these youths
become delinquent, addicted to drugs and alcohol, depressed, suicidal, and even homicidal. About
70 percent of middle- and high-school students have experienced bullying at some point, and
40 percent of school shooters were bullied (Langman, 2018). According to Copeland et al. (2013),
bully-victims report the highest level of suicidality at 24.8 percent versus 5.7 percent in young
adult nonbullied students and the highest levels of depressive disorders (21.5 percent versus
3.3 percent in nonbullied). Bullies are at an increased risk for antisocial personality disorder.
There were also sex-specific risks, with males at 18.5 times greater risk for suicide, and females at
26.7 times greater risk for agoraphobia (Copeland et al., 2013).
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Chapter 6 Bullying
A longitudinal study revealed high rates of suicide for males and agoraphobia for females continuing into adulthood from bullying. The researchers proposed several theories about what changes
take place over time from bullying based on physiologic changes including altered hypothalamicpituitary-adrenal axis (stress response), a biomarker for stress, and the shortening of telomere
length as a result of stress. No direct correlation was made between these physiologic changes and
the development of psychiatric illness, but there is evidence linking stress to psychiatric illnesses
(Copeland et al., 2013).
▸
Literature
Areas of Agreement
Areas of agreement in the literature are the common characteristics of victims and bullies, and the
long-term effects on both groups. Researchers agree that bullying is a widespread problem that
is probably underreported, and programs are needed to effectively change and prevent bullying.
Another area of agreement is the provision of a safe learning environment for all students. Passage of the Safe School Climate Act in 2006 required school districts to establish policies to address
bullying behaviors by January 2007. The act provides an excellent description of school liability and
elements of negligence involving bullying. School personnel have a legal duty to protect students
from foreseeable harm. Acts of bullying may result in physical and psychological harm to students
that could linger for a lifetime (Safe School Climate Act of South Carolina, 2006).
Involving parents in school-based programs to prevent and reduce bullying might have a positive effect. Note that 75 percent of the time the parent is the only one who knows the child is being
bullied, and only about 50 percent of parents intervene on the child’s behalf (Axford et al., 2015).
Parents will work with the school to address bullying.
There are bullying prevention programs that have been studied with positive effects on at-risk
students. In one study the method was a randomized control sample of 7,010 fourth- to sixth-grade
youths over a 12-month period, which revealed that the antibullying program improved self-esteem
and harm reduction for vulnerable populations. By changing how teachers respond to bullying and
by intervening more effectively, victims are more likely to feel supported at school. When changing the peer response to bullying when bullied, students report that at least one classmate defended
or comforted them, they have higher self-esteem, and they are more accepted and less rejected by
classmates than those with no support (Juvonen, Schacter, Sainio, & Salmivalli, 2016).
To summarize, most literature agrees on the common definition of bullying, types of bullying,
and the need for a safe learning environment as well as the importance of parental involvement
and educator intervention. There is a long list of physical and psychological conditions that are
related to stress from bullying.
Areas of Disagreement
Areas of disagreement are just what programs are effective, what factors influence bullying, and
what factors lend support to bullies and victims that can provide a positive outcome for both. Some
studies suggest parental support or having friends that support them contributes to the bullying victims’ resiliency. While many of the studies in the literature review demonstrate improvement with
educator, administrative, peer, and parental support, it is difficult to discern which factors contribute to the support and build resilience in the population at risk for bullying
Gaps
67
The Moderating Effects of School Climate on Bullying Prevention Efforts was a program based
on a 1-year elementary school bullying prevention trial of Steps to Respect (STR) program. The STR
program is based on a social-ecological model of bullying, which focuses on positive school climate,
teacher and staff training on improved monitoring, and intervention in bullying. The marked contrast between main effects of climate versus intervention status suggests that bullying prevention
is not a simple or quick fix but rather multifactorial (Ryzin & Low, 2014). Unfortunately, several
recent meta-analyses reveal that over the last decade school-wide bullying prevention evaluations
have demonstrated negligible to nonsignificant results. Once again, no clear-cut agreement on the
methods that are effective and the lack of success indicate that bullying is a multifaceted problem.
In the study of child and school predictors of bullying behaviors, researchers conducted a multilevel analysis in 648 primary schools. They examined child and school risk factors for bullying
behavior in a large cohort of school-age children (Fink & Wolpert, 2018). This study found no particular connection among age, class size, race, or sex, but it revealed that the connection children
feel toward school and their positive perception about school appears to be connected to decreased
bullying. This study suggests promoting a positive school climate through universal whole-school
approaches may be beneficial to high-risk children (Fink & Wolpert, 2018).
Bullying Prevention: A Call for Collaborative Efforts Between
the School Nurse and School Psychologists
Healthy People 2020 calls for a target of 10 percent reduction in the incidence of bullying from
19.9 percent to 17.9 percent by 2020 (Kub & Fieldman, 2015). This article outlines how nurses and
school psychologists can use complementary roles to prevent bullying. They also mention that children with high levels of parental support reported lower levels of internalizing distress, which may
buffer the effects of victimization.
Collaboration among officials and parents can provide support that may safeguard victims from
negative outcomes. Parent support for female victims and teacher, classmate, and school support for
male victims were found to buffer victims from internalizing distress from bullying, and conversely
those who perceived less support internalized more distress from bullying (Davidson & Demaray,
2007). While many of these studies have demonstrated some positive effects of bullying prevention
programs, there is little agreement on which factors lead to the resilience of the bullied population,
once again suggesting this requires a multifaceted approach to problem solving and prevention.
▸
Gaps
Policies alone or in combination with a bullying prevention curriculum do not automatically translate into behavioral changes. A recent meta-analysis revealed over the last decade school-wide
bully prevention program evaluations have demonstrated negligible to nonsignificant results of
such programs (Ryzin & Low, 2014). The school has a responsibility to provide a safe environment
for youth just as a workplace is liable for promoting a nonthreatening workplace and providing a
proper response to threatening behaviors. Wherever you find bullies, their behavior and impact
must be controlled or managed. Programs must be effective and school administrators, teachers,
nurses, and counselors must provide a safe school climate. Herein lies the gap in bully prevention.
Under the Safe School Climate Act of 2006, school districts were required to establish policies
to address these behaviors by January 2007. Notably this act was finally passed after school deaths
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Chapter 6 Bullying
hit the all-time high of 256 in 2000. It provides an excellent description of school liability and elements of negligence involving bullying. School personnel have a legal duty to protect students from
foreseeable harm. It is foreseeable that acts of bullying may result in physical and psychological
harm to students that could linger for a lifetime (Safe School Climate Act, 2006).
The gap includes some very interesting facts: 35 percent of children bullied report their
teachers do not know about it, 29 percent of children say the teachers made it worse, and another
25 percent of teachers see bullying as a rite of passage with only 4 percent intervening (Juvonen et al.,
2016). Effective bullying prevention programs help teachers learn to intervene effectively, and victims
are more likely to feel supported by the school (Juvonen et al., 2016). Just as important as educator
support and intervention is being defended or comforted by a friend, which increases self-esteem
and makes the victim feel less rejected and supported. Parental support is key because the parent
may be the only person the victim confides in. Parents are in an important position to respond to
bullying incidents, whether their child is the victim or the bully. Continuing with this theme of involving parents in school-based programs to prevent and reduce bullying, what effect does it have?
According to this article, the logic of involving parents is so that they will tell the school if their
child is being bullied and advocate for the child.
▸
Summary
We find broad agreement on the definition, types of bullying, and even the most common characteristics of bullies and victims. The literature clearly portrays policy makers busy making changes
after all the mass shootings. They have tried to effect policies to provide a safe school climate. Disturbing facts come to light with the literature review: educators who do not see bullying as a problem, educators who do not intervene, educators who do so ineffectively so the situation is made
worse, educators who do not know who is being bullied, and parents who either do not know
their child is a victim or do not advocate for their child, but it seems we may still be missing some
important pieces of information. Bullying is not a harmless rite of passage and has real consequences such as psychiatric illnesses, suicide, and homicide. Bullying can cause lifelong emotional
scarring, depression, and anxiety. Approximately 40 percent of school shooters studied were bullied
and they needed help, but no one recognized this until it was too late for them and their victims.
There are many opportunities to develop effective antibullying programs; educate our teachers, parents, and students; recognize high-risk students and intervene early; and reevaluate the
effectiveness of our programs. There is enough data to suggest a multifaceted approach is needed
in bullying prevention programs. While there is abundant research suggesting that parental, educator, and peer support boosts resilience in the vulnerable bullied population, little data was found
from the actual educators’ point of view, perhaps one of the most critical aspects needed in prevention programs. Nurse practitioners may see a child 15 minutes during an office visit or maybe not
at all because some children only go to a clinic or urgent care when they are physically sick, but educators and school nurses and counselors are with these children every day. The opportunity for
them to intervene may be as crucial as the parent’s role. What might we learn from the experts on
the front line?
▸
Acknowledgment
The authors acknowledge the help of Haley Fredericks for the preliminary literature review on bullying.
References
69
References
Axford, N., Farrington, D., Clarkson, S., Bjornstad, G., Wrigley, Z., & Hutchings, J. (2015). Involving parents in school-based
programmes to prevent and reduce bullying: What effect does it have? Journal of Children’s Services, 10(3), 242–251.
Copeland, W. E., Wolke, D., Angold, A., & Costello, J. (2013). Adult psychiatric outcomes of bullying and being bullied by
peers in childhood and adolescence. JAMA Psychiatry, 70, 419–426.
Davidson, L. M., & Demaray, M. K. (2007). Social support as a moderator between victimization and internalizingexternalizing distress from bullying. School Psychology Review, 36, 383–405.
Fink, P. E., & Wolpert, M. (2018). Child-and school-level predictors of children’s bullying behavior: A multilevel analysis in
648 primary schools. Journal of Educational Psychology, 110, 17–26.
History of school shootings in the United States. (2018). Retrieved from http://www.k12academics.com/school-shootings
/history-school-shootings-united-states
Juvonen, J., Schacter, H., Sainio, M., & Salmivalli, C. (2016). Can a school-wide bullying prevention program improve the
plight of victims? Evidence for risk × intervention effects. Journal of Consulting and Clinical Psychology, 84, 334–344.
Kub, J., & Fieldman, M. A. (2015). Bullying prevention: A call for collaborative efforts between school nurses and school
psychologists. Psychology in the Schools, 52(7), 658–671.
Langman, P. (2018). Statistics on bullying and school shootings. Retrieved from https://schoolshooters.info/sites/default
/files/bullying_school_shootings_1.1.pdf
Magnuson, S., & Norem, K. (2009). Bullies grow up and go to work. Journal of Professional Counselling: Practice, Theory,
and Research, 37, 34–51.
Perron, T. (2013). Peer victimization; Strategies to decrease bullying in schools. British Journal of School Nursing, 8(1), 25–29.
Ryzin, M. V., & Low, S. (2014). The moderating effects of school climate on bullying prevention efforts. Developmental
Psychology, 50, 2093–2104.
Safe School Climate Act of South Carolina, H.B. 3573, South Carolina Code §59-63-120, §59-63-140 (2006). Retrieved from
https://ed.sc.gov/scdoe/assets/File/educators/educator-preparation/educator-units/climateact.pdf
CHAPTER 7
Applying Middle-Range
Concepts and Theories
to the Care of Vulnerable
Populations
Nicole Mareno
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe how middle-range theories in nursing apply to vulnerable populations.
2. Apply at least one theory to a specific population of interest to you.
3. Provide at least one research example that uses a middle-range theory.
▸
Introduction
Nursing science attends to the nature and experience of being human (Meleis, 2012). The nursing
profession’s disciplinary focus is to improve the quality of life and health of individuals, families,
communities, and society (McCurry, Hunter Revell, & Roy, 2010). Contemporary nursing care is
heavily influenced by knowledge development that is happening within a dynamic, evolving social and environmental healthcare context (McCurry et al., 2010). Risjord (2010) argued that nursing knowledge development, which he termed the “nursing standpoint,” starts from “nurses’ lives”
(p. 74), or that the problems and solutions in nursing are identified within nurses’ daily practice.
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Chapter 7 Applying Middle-Range Concepts and Theories to the Care of Vulnerable Populations
Problem identification leads to the development, refinement, and dissemination of knowledge,
with theory providing the foundation (Risjord, 2010). Risjord posits that appropriate theories for
the nursing profession address nursing problems, whether they are proposed by nurses or borrowed from other disciplines.
Middle-range theories are useful in addressing the problems of nursing, especially among vulnerable populations. Although middle-range theories address specific phenomena within nursing practice, the theories are broad enough to be applied to a variety of patient populations and
across many practice settings. Middle-range concepts and theories selected for this chapter were
adapted from content in a graduate-level family nurse practitioner course on healthcare theory. In
the course, family nurse practitioner students applied middle-range concepts and theories to practice. Either the concept or an associated theory is discussed and applied to the care of the vulnerable. Concepts from this chapter could be used in doctoral courses for concept analysis, explored
in the context of vulnerability (see Appendix 7-1).
In this chapter, you will learn about eight middle-range concepts or theories including
individual-level middle-range theories, social middle-range theories, and middle-range theories
that integrate multiple perspectives. The chapter will provide definitions of the concepts comprising each middle-range theory, and each middle-range concept or theory will be applied to the care
of vulnerable populations using a specific example from the literature so you can see a practical
application of each middle-range concept or theory in the care of vulnerable populations.
▸
Individual-Level Middle-Range Theories
In proposing solutions to problems of vulnerability, an essential first step is to understand individuallevel factors. Once you understand the concepts from an individual level, you can examine the
influence of families, communities, and populations. This chapter will discuss the individual-level
middle-range concepts or theories of self-efficacy, adherence, and change next.
Self-Efficacy
Self-efficacy has been defined as a system of self-monitoring whereby an individual judges his
or her capability to carry out a behavior or course of action (Bandura & Perloff, 1967; Bandura,
1977). Cognitive processing, in the form of reflective thought, helps individuals to set standards
for their behavior and generate the skills necessary to accomplish behavioral goals. Bandura and
Perloff noted that individuals generate self-prescribed rewarding or punishing consequences that
they apply depending on how their behavior compares to a self-selected external evaluation criterion. An assumption of self-efficacy theory is that individuals have the cognitive ability to exercise
behavioral control and create evaluation criteria to judge their abilities.
In social cognitive theory, Bandura (1986) asserted that self-efficacy was an important mediator within the triad of reciprocity among behavior, cognition, and other personal/environmental influences. Bandura (1977) proposed two components of self-efficacy: self-efficacy expectations and
outcome expectations. Bandura (1977) defined self-efficacy expectations as an individual’s belief
that he or she can successfully carry out a behavior to produce an anticipated outcome. Bandura
(1977) defined outcome expectations as a person’s estimation that a particular behavior will lead to
a particular outcome. An individual may believe that a particular behavior leads to a certain outcome (outcome expectations) but may or may not possess the belief that he or she can successfully
carry out the behavior (self-efficacy expectations).
Individual-Level Middle-Range Theories
73
Bandura and colleagues’ early work with individuals who suffered from snake phobias provided the foundation for self-efficacy theory (Bandura, Blanchard, & Ritter, 1969). Bandura (1977)
asserted that individuals who are motivated by fear avoid threatening situations that they believe
exceed their coping abilities, whereas individuals who believe they are capable will unquestionably
handle situations or problems. Self-efficacy expectations influence the amount of effort an individual expends in making a behavioral change, and how likely an individual is to persist with accomplishing the behavioral change in spite of obstacles (Bandura, 1977). Bandura was careful to
note that expectations alone do not produce behavioral changes, and individuals may be capable
of change but do not possess the incentive to engage in the process.
Self-Efficacy Sources
Bandura (1986) proposed that individuals use four informational self-efficacy sources that work
in a reciprocal manner: (1) enactive attainment; (2) vicarious experience; (3) verbal persuasion;
and (4) physiological feedback.
Enactive Attainment
Enactive attainment is defined as personal mastery experiences or the actual performance of the
behavior (Bandura, 1977, 1986). Bandura (1995) acknowledged that an individual’s perception of
the difficulty of the behavioral change, amount of effort required, context/environment of the behavioral change, and past pattern of successes and failures had an impact on self-efficacy. Bandura
(1977, 1986) theorized that mastery with one behavioral change can have a carryover effect in the
execution of other behavioral changes.
Vicarious Experience
Bandura (1977) defined vicarious experience as expectations that are derived from seeing others
perform a behavioral change (or threatening activity) without experiencing negative consequences.
Observers subsequently self-model the behavior and use social comparison to persuade themselves
that they are capable of making the change with effort and perseverance. Bandura argued that an
individual needs to have clear performance outcomes, otherwise improvements in self-efficacy may
be based on the observed individual’s successful performance of the behavioral change.
Verbal Persuasion
Verbal persuasion is defined as leading individuals, through verbal suggestion, into believing that
they can successfully make behavioral changes (Bandura, 1977). Bandura stated that verbal persuasion is less effective than enactive attainment because an individual is not authentically experiencing success with the change and can easily be derailed by a disconfirming experience.
Physiological Feedback
Bandura (1977) asserted an individual’s judgment of his or her ability to successfully make
changes depends, in part, on the individual’s acknowledgment and response to physiological indicators (e.g., anxiety). Bandura originally termed this “emotional arousal” (p. 198). If the individual experiences negative physiological symptoms, he or she may be less inclined to engage in the
behavioral change process.
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Chapter 7 Applying Middle-Range Concepts and Theories to the Care of Vulnerable Populations
Application to Vulnerable Populations
Vulnerability may increase the likelihood of threatening situations or obstacles to success.
To support individuals who embark on the behavioral change process, nurses can use selfefficacy theory to understand barriers and facilitators to self-efficacy. Nursing interventions
can increase the opportunity for personal mastery experiences (enactive attainment), include
family or support systems as role models in the behavioral change process (vicarious experience), use professional communication skills to help patients and families identify facilitators
to change (verbal persuasion), and provide nursing care that helps to mitigate anxiety (physiological feedback). Assisting patients to improve self-efficacy in the behavioral change process
can occur in any setting (e.g., long-term care), and among any population or subpopulation
(e.g., pregnant adolescents).
Enhancing self-efficacy among vulnerable populations requires attention to the patient’s
(and family’s) socioeconomic status, strength of the support system relationships, primary language spoken, literacy level, educational level, and the context/environment in which the patient
and family live. Opportunities for personal mastery experiences may be limited, for example,
by lack of financial means or community safety issues. Nurses are well positioned to assess for
barriers to self-efficacy, including demoralization with past efforts to change. Professional,
empathetic communication is critical when helping to enhance self-efficacy among vulnerable populations.
Research Example
Czajkowska, Hall, Sewitch, Wang, and Körner (2016) examined the relationships among skin
self-examination, level of perceived provider support for skin self-examination, and self-efficacy
for skin self-examination in a sample of adult melanoma survivors. Czajkowska and colleagues
studied 242 patients over 18 months, providing education about early signs of melanoma recurrence and collecting data at four separate time points. Self-efficacy for skin self-examination was
23 percent higher after the educational intervention, and remained higher 1 year later. Czajkowska
et al. found that patients who perceived a greater amount of provider support for skin self-examination (verbal persuasion) expressed a higher degree of self-efficacy in performing skin checks to
assess for early signs of melanoma recurrence.
Practical Application
Brenda is 19, recently divorced from a physically abusive husband, and has just given birth to her
first child. The vaginal delivery was without incident, and both mother and child are recovering
on the postpartum unit. Brenda has had three unsuccessful attempts to breastfeed her daughter.
Brenda’s primary nurse is concerned that it is an issue of low self-efficacy with breastfeeding.
The primary nurse outlined several interventions to promote Brenda’s breastfeeding self-efficacy
including: (1) providing two sessions with a lactation consultant to increase opportunities for
personal mastery (enactive attainment); (2) encouraging Brenda to observe her roommate who
has been successful with breastfeeding attempts (vicarious experience); and (3) using encouraging words (verbal persuasion) and empathetic listening to reduce anxiety (physiological feedback). After two sessions with the lactation consultant to practice breastfeeding techniques, and
self-modeling after watching her roommate breastfeed, Brenda was successfully able to breastfeed her daughter.
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Adherence
To provide patient and family-centered nursing care to vulnerable populations, understanding
the attributes of the concept of adherence and factors impacting adherence is critical. Through
concept analysis Cohen (2009) defined adherence as an agreement (or goal concordance) between
or among a patient, family, and healthcare provider in determining necessary persistence in the
practice and maintenance of desired, recommended health behaviors. McBride, Bryan, Bray, Swan,
and Green (2012) argued that adherence differs from other health change outcomes because the
focus is on persistence in practicing and maintaining treatment recommendations from a healthcare provider. Cohen (2009) identified four attributes of adherence: (1) patient (and family) behaviors align with provider treatment recommendations, (2) patient (and family) increase health
knowledge and master the new behavior, (3) patient/family and healthcare provider have concordant goals with plans to overcome barriers, and (4) ongoing support for maintaining treatment
recommendations.
Conceptually, adherence involves a group of characteristics that leads to an outcome of improved health outcomes. Characteristics of adherence include communication, goal setting, practice of health behaviors/skills, and self-management. Because adherence can apply to a variety of
treatment recommendations (e.g., taking a medication, engaging in physical activity), the way the
concept is operationalized can vary. In general, adherence has been operationalized as a percentage
of time that an individual correctly or properly fulfills a treatment recommendation. For example,
Walsh, Mandalia, and Gazzard (2002) measured 30-day medication adherence by a self-report diary, while Colbert, Sereika, and Erlen (2012) used electronic event monitoring (a medication cap
containing a microchip that records the date and time the bottle is opened) to assess the percentage of prescribed medication administrations taken.
Application to Vulnerable Populations
A wide constellation of personal, family, social, economic, religious, environmental, and
societal factors can impact an individual’s ability to adhere to a healthcare provider’s treatment
recommendations. In addition to sociodemographic factors, including age and educational level,
researchers have explored an individual’s functional health literacy (Colbert et al., 2012) and selfefficacy (Nokes et al., 2012) as factors impacting adherence to treatment recommendations. While
Colbert and colleagues did not find a strong association between functional health literacy and
adherence to treatment, Nokes and colleagues found that self-efficacy was a significant predictor
of treatment adherence. The treatment, especially if the treatment creates untoward side effects,
can be a barrier to adherence.
When caring for vulnerable populations, sensitivity to an individual’s or family’s life circumstances including family income, employment status, ability to afford health insurance, environmental living conditions, transportation issues, and personal beliefs/value systems is necessary.
While a desire to adhere to treatment recommendations may be present, social or financial issues
may impact adherence. As Cohen (2009) noted, two critical attributes of adherence are ongoing
support and plans to overcome barriers to treatment adherence.
Research Example
Beebe, Smith, and Phillips (2017) examined the effect of a weekly telephone problem-solving
intervention on psychiatric and nonpsychiatric medication adherence among 105 psychiatrically
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stable individuals with schizophrenia spectrum disorders. Beebe et al. conducted a randomized
controlled trial and included a control group who did not receive the telephone intervention.
Medication adherence was measured two ways: Patients self-reported pill counts for both psychiatric and nonpsychiatric medications, and serum antipsychotic levels were drawn at 6 months. Beebe
and colleagues reported that there were no significant differences in psychiatric and nonpsychiatric medication pill counts between the control and experimental groups at 6 months. When serum
antipsychotic levels were assessed, 54.7 percent of the experimental group who received the telephone intervention had therapeutic antipsychotic levels at 6 months compared to 32.7 percent of
the control group. Medication adherence continues to be suboptimal among psychiatrically stable
individuals with schizophrenia spectrum disorders; however, the researchers provided preliminary evidence of improved outcomes using telephone support.
Practice Application
George is a 57-year-old attorney who was recently diagnosed with hypertension. The nurse
practitioner caring for George has recommended dietary modifications and physical activity, in
addition to a low dose of an antihypertensive medication. George comes to his follow-up visit
and tells the nurse practitioner that he stopped taking the antihypertensive medication after
2 days because he “felt funny.” George shares that he does not have time to exercise and has
to eat out at restaurants frequently with his clients. The nurse practitioner explores George’s
beliefs, values, and perception of the situation. George expresses fear about having to make lifestyle changes and take a medication for his blood pressure. George and the nurse practitioner
come up with three manageable goals for George, they discuss potential side effects of the medications and how to manage them, and the nurse practitioner gives George a diary to keep track
of his progress. During his 4-week follow-up visit George shares that he has been able to incorporate two walks a week into his schedule, has been taking his daily medications more than
85 percent of the time, and has been making an effort to have fruit or vegetables for a snack instead of potato chips or cookies.
Change
For nurses to assist patients in successfully making behavioral changes, understanding an individual’s decision-making process as it pertains to behavioral change is an important nursing
task. This section discusses the transtheoretical model of change (Prochaska, 1979; Prochaska &
DiClemente, 1982; Prochaska & DiClemente, 1983). The transtheoretical model of change (TTM)
is an individual-level theory that is useful for understanding medical decisions that start a behavioral change process in patients who nurses may historically label “nonadherent” or “resistant
to change.”
The TTM was developed to assess readiness for change among a population of individuals who
smoked (Prochaska & DiClemente, 1983). A guiding principle of the TTM is that healthcare providers may be more successful in helping patients change behaviors if their interventions are tailored to a patient’s place in the change process. Philosophically, a nurse using the TTM respects the
patient’s self-determinism and autonomy in the decision-making process. Individual-level change
theories involve numerous assumptions including, but not limited to, the following: (1) individuals
value good health; (2) individuals will make necessary changes to reduce unhealthy behaviors;
(3) behavior is under volitional control; and (4) an individual’s beliefs, values, attitudes, and perception drive health behaviors (Crosby, Kegler, & DiClemente, 2009).
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Central Constructs of the TTM
The TTM has four central constructs: stages of change, processes of change, self-efficacy, and
decision-making ability.
Stages of Change
The TTM has six stages of change: precontemplation, contemplation, preparation, action, maintenance, and termination (Prochaska, 1979; Prochaska & DiClemente, 1982). The stages of
change are temporal, or have a time orientation. Individuals progress through these stages as
follows: (1) precontemplation, the individual has no intention of making a behavioral change in
the next 6 months; (2) contemplation, the individual intends to make a behavioral change in the
next 6 months; (3) preparation, the individual intends to make a behavioral change in the next
30 days; (4) action, the individual is actively making behavioral changes for fewer than 6 months;
(5) maintenance, the individual has maintained the behavioral change for greater than 6 months;
and (6) termination, the individual has incorporated the behavioral change into his or her daily life
and has no temptation to relapse, or revert, to old behaviors (Prochaska, Redding, & Evers, 1997).
At any stage an individual may relapse into old behaviors and is at risk for restarting the process.
Processes of Change
For behavioral change to take place, 10 processes, both overt and covert, are used to progress
through each stage (Prochaska & DiClemente, 1983; Prochaska, Velicer, DiClemente, & Fava, 1988).
The first five processes are cognitive and are primarily used by individuals in the precontemplation, contemplation, and preparation stages. The last five processes are behavioral and are used by
individuals who are in the action and maintenance stages. The 10 processes can be described as
follows: (1) consciousness raising, or increasing awareness about a problem behavior; (2) dramatic
relief, emotional release about the problem behavior; (3) environmental reevaluation, a social reappraisal of how the problem behavior affects the environment; (4) social liberation, an individual’s
appraisal of how there are opportunities within his or her environment to make the change easier;
(5) self-reevaluation, an individual’s appraisal of him- or herself with or without the problem behavior; (6) stimulus control, an individual reengineers the environment to remove things that remind
him or her of the problem behavior; (7) helping relationships, identification of support persons to
help with the change process; (8) counter conditioning, an individual learns to substitute healthy
behaviors for problem behaviors; (9) reinforcement management, an individual rewards him- or
herself for avoiding the problem behavior; and (10) self-liberation, an individual makes a commitment to maintain the new healthy behavior (Prochaska & DiClemente, 1983; Prochaska et al., 1988).
Self-Efficacy
Earlier, this chapter discussed self-efficacy (Bandura, 1977). In terms of the change process, high
levels of self-efficacy are especially important in high-risk situations when individuals are confronted with the opportunity to relapse into old behaviors.
Decision-Making Ability
A final construct of the TTM is decision-making ability, which involves the weighting of pros and
cons, or consideration of risks and benefits. Janis and Mann (1977) theorized that individuals
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experience decisional conflicts and proposed responses an individual might use to resolve decisional conflicts. Janis and Mann proposed that individuals weigh the benefits of the decision to self/
others, approval of self/others to make the decision, costs of the decision to self/others, and disapproval of self/others in making the decision.
Application to Vulnerable Populations
Labeling individuals as “nonadherent” to treatment recommendations or nursing plans of care has
the potential of threatening the therapeutic relationship, especially among individuals who may be
vulnerable based on age, gender, race, ethnicity, sexual orientation, or socioeconomic status. Using active listening, nurses can assess a patient’s readiness for change using the TTM as a guide.
Nurses should carefully consider a patient’s sociocultural needs. A patient might be amenable and
ready to change, however, family issues, finances, cultural or environmental factors could have an
impact on an individual’s ability to move through the change process. Designing nursing interventions based on a patient’s stage of change is important, especially if barriers to the change process
are identified and managed in the treatment plan.
Research Example
Johnson, von Sternberg, and Velasquez (2017) conducted a secondary analysis of data from a
randomized controlled trial of an alcohol-exposed pregnancy prevention intervention to assess
for differences in the process of changing alcohol behavior among 41 depressed and 171 nondepressed women at risk for alcohol-exposed pregnancies. Johnson et al. measured TTM constructs
including decisional balance, self-efficacy, and experiential and behavioral processes of change at
baseline, and at 9 months, for both groups of women. Women with depression reported more cons
for changing their alcohol use and were strongly tempted to drink while pregnant. Struggles with
decisional balance and lack of self-efficacy to resist temptation predicted failure to make behavioral changes for women with depression. Women who report depression and who are at risk for
alcohol-exposed pregnancies may benefit from specific interventions to improve self-efficacy and
support decisional balance.
Practice Application
Jeremiah is a student at a state university. He makes an appointment at the student health center
on campus because he has been experiencing stress related to his academic workload as a chemistry major and recent termination of a long-term relationship with his girlfriend. Jeremiah is scared
about developing health problems because he has not been sleeping well; is eating more fried foods,
pizza, and sweets from the dining hall; and has been drinking beer some nights in his dorm room
to cope with stress. Jeremiah expresses his desire to begin proactively managing his stress within
the next 2 weeks. The nurse assesses that Jeremiah is in the preparation stage of the TTM. Using
two processes of change, social liberation and self-reevaluation, the nurse and Jeremiah discuss
opportunities on the college campus to make his change easier, how Jeremiah sees himself in his
current state of stress, and how he pictures his life with less stress. Jeremiah identifies a stress management course on campus that he can participate in, plans to have a side salad instead of eating
french fries with his meals in the dining hall, and decides to call a friend instead of drinking beer
alone in his dorm room. Jeremiah tells the nurse that he sees himself becoming better able to focus
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on his coursework with less stress. The nurse plans to see Jeremiah in 2 weeks at the health center
to assess where he is at with the change process.
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Social Middle-Range Theories
Social middle-range concepts and theories address the structure and interactions of social support
systems within relationships. Social support systems can include family members, significant others,
friends, and community groups. This section discusses a middle-range theory of social support.
Social Support
An individual’s social network can impact his or her health status and health outcomes. The term
social support was coined by Cassel (1974), who theorized that supportive persons may play a role
in improving an individual’s health status and helping an individual cope with stressors. Bowlby’s
(1971) attachment theory, which addressed an individual’s ability to form and maintain socially supportive relationships, served as a basis for contemporary theories of social support. Bowlby maintained that if an individual experienced secure attachments in childhood this would translate into
an ability to engage in well-adjusted adult social relationships.
Discussion in this section makes use of Finfgeld-Connett’s (2005) conceptual model of social
support, which is based on a concept analysis of social support and includes four key aspects:
(1) emotional support, or comforting behaviors that one person provides to another person in order
to alleviate anxiety, uncertainty, or hopelessness; (2) instrumental support, when one person provides
tangible goods or services to assist another person; (3) structural support, the involvement of a network of support persons including relatives, friends, coworkers, and community support groups; and
(4) functional support, the provision of assistive information.
Application to Vulnerable Populations
When caring for vulnerable populations, an important nursing role is to identify social networks
and support systems that are, or may be, influential in improving an individual’s health status and
health outcomes. Assessment of supportive individuals or groups includes the strength of the relationships and resources available. Of equal importance is the identification of individuals or groups
who may serve to threaten an individual’s health status or health outcomes; minimizing or avoiding
the inclusion of unsupportive individuals or groups in the nursing plan of care may help to overcome barriers that threaten the health of vulnerable populations.
Research Example
Black, Maitland, Hilbers, and Orinuela (2017) explored the role of social relationships and informal
social networks that Australian adults with type 2 diabetes used as resources to manage their
disease. Semistructured interviews were conducted with 26 adults who sought care at a diabetes center. The participants reported frequent use of informal social networks of support to help
with disease management. The presence of a spouse was the most significant structural social
support resource for the patients during appointments. Participants’ children provided structural support by helping to explain health information during clinic visits. A few participants
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also reported informal functional social support given by neighbors and community organizations. The findings of this study can be useful for nurses to help patients with chronic diseases
identify critical support persons within their social networks that can provide support and help
explain information.
Practice Application
Chad has been experiencing intimate partner violence for the last 2 years. His boyfriend, Phillip,
has been verbally and physically abusive toward Chad. Chad has sought assistance from a local shelter in order to remove himself from the abusive situation. The nurse at the local shelter helps Chad to identify sources of social support. Chad tells the nurse that he has a tenuous
relationship with his parents. He identifies two friends who can provide comforting words to
him (emotional support). One of his friends has offered to drive Chad to and from his job as
a store manager at a local coffeehouse (instrumental support). Chad identifies additional coworkers who will be supportive and protective of Chad’s safety at work as he transitions away
from his relationship with Phillip (structural support). Finally, Chad identifies functional support systems including a local community support group for persons who have experienced
intimate partner violence.
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Integrative Middle-Range Concepts and Theories
Integrative middle-range concepts and theories incorporate multiple perspectives. Integration may
include individual-level, social, community, or societal factors. This section discusses the concepts or
middle-range theories of health-related quality of life, health promotion, resilience, and chronic care.
Health-Related Quality of Life
Historically, scholars have had difficulty defining the concept of quality of life because multiple
definitions of the concept exist (Sandau, Bredow, & Peterson, 2013). Despite multiple definitions
of the concept, quality of life has been broadly defined as satisfaction with life, and has three primary aspects: assessment of well-being, broad domains (e.g., physical, psychological, economic,
spiritual, social), and the components of each domain (Spiker, 1996). Health-related quality of life
(HRQOL) shares the central aspects of quality of life, and has been characterized as multidimensional, temporal, and subjective (Sandau et al., 2013).
Wilson and Cleary (1995) proposed that HRQOL consists of five dimensions that exist across a
biologically, socially, and psychologically complex continuum: (1) biological factors, (2) symptoms
experienced, (3) functional status, (4) general perceptions of health status, and (5) overall quality of
life. Wilson and Cleary proposed that individual characteristics, psychological support, social support, economic support, individual value/preferences, personality/motivation, and environmental
factors have an impact on the five dimensions, and quality of life overall.
Application to Vulnerable Populations
Vulnerable populations have unique sociocultural needs that impact HRQOL. Biological factors,
including racial or ethnic disparities in disease prevalence, and lack of access to health services put
individuals at risk for poorer health outcomes and lower levels of HRQOL (Institute of Medicine
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81
[IOM], 2003). As Wilson and Cleary (1995) proposed, the dimensions of HRQOL exist across a continuum; environmental, social, and economic issues experienced by the vulnerable have an impact
on HRQOL. HRQOL is subjective; thus, individual perception of health status can have an impact
on the experience of disease symptoms and life satisfaction.
Research Example
Coleman (2017) examined HRQOL and depressive symptoms among human immunodeficiency
virus (HIV) seropositive African American men and women on antiretroviral therapy. Coleman
conducted a descriptive correlational study to explore which domains of HRQOL predicted depressive symptoms. Seventy men and women participated by completing two instruments: the SF-36
(measures dimensions of HRQOL) and the Center for Epidemiological Studies Depression Scale
(CESD-D). In the final statistical model, 53 percent of the variance in depressive symptoms experienced by participants was explained by emotional well-being, role limitations on emotional health,
and pain. The emotional aspects of antiretroviral treatment, role changes due to emotional health
issues, and physical pain are important quality-of-life factors to explore with seropositive patients.
Coleman concluded that screening and treating seropositive African American men and women
for depression is important for improving HRQOL.
Practice Application
Amelia, age 31, was recently diagnosed with locally advanced colon cancer (nonmetastatic). Amelia
is married and has two children, a 3-year-old son and a 1-year-old daughter. Her treatment for the
colon cancer has included a recent surgery to remove the large tumor in her colon and chemotherapy. Amelia shares with the nurse at the outpatient chemotherapy center that the treatment
for colon cancer has impacted her quality of life in the areas of overall life satisfaction and general
perception of her health. Amelia tells the nurse that she is experiencing impaired physical functioning, and she continues to suffer from physical symptoms including, but not limited to, fatigue,
hair loss, and low appetite. She perceives her health status to be “poor” and fears that the cancer
“will take me away from my husband and children.” The nurse incorporates several dimensions of
HRQOL into Amelia’s treatment plan including symptom management, identification of psychological and social support systems, and economic support for Amelia’s continued recovery after
she finishes the chemotherapy treatment.
Health Promotion
Health promotion integrates several concepts and constructs including self-efficacy, social support, and change. Health has come to be defined as more than the absence of disease. Pender,
Murdaugh, and Parsons (2010) define health as an individual’s drive toward achieving his or her
fullest potential, which includes times of wellness and illness. Pender and colleagues’ definition of
health encompasses an individual’s lifestyle, social relationships, and environmental factors.
The health-promotion model (HPM; Pender, 1996; Pender et al., 2010) is a framework for delivering nursing care to support health-promotion behaviors. The HPM was originally developed
to target individuals; however, you can use the framework to target families, groups, or communities. The HPM has three primary areas that nurses can use to assess health-promotion behaviors: (1) personal characteristics and experiences, (2) behavior-specific cognition and affect, and
(3) behavioral outcome (Pender, 1996; Pender et al., 2010).
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Personal characteristics and experiences include prior behavior and personal factors (e.g.,
biological, sociocultural) (Pender, 1996; Pender et al., 2010). Behavior-specific cognitions include
perception of benefits/barriers to action, perception of self-efficacy, and movement (affect) toward
actively engaging in health-promotion behaviors (Pender, 1996; Pender et al., 2010). Interpersonal
influences (e.g., social support) and situational/environmental influences are proposed to have an
effect on cognition and activity-related movement. Finally, the HPM incorporates elements of the
change process including commitment to a plan of action and acknowledgment of competing demands (Pender, 1996; Pender et al., 2010). The final outcome is engagement in health-promotion
behaviors.
Application to Vulnerable Populations
Health promotion, especially preventive care, is essential for ethnic minority groups and the economically disadvantaged, groups who often lack access to safe, effective, timely, equitable, and
patient-centered care (Agency for Healthcare Research and Quality, 2008; Richardson & Norris,
2010). Understanding personal factors (e.g., lack of finances to afford health insurance) and an individual’s perception of the benefits and barriers of engaging in health-promotion behaviors is an
important component of a nursing assessment. When working with vulnerable populations, you
can tailor screening recommendations and health-promotion practices to the patient’s and family’s
cultural values/beliefs, finances, and access to support within the community.
Research Example
Graham (2016) examined perceived barriers to health promotion among women in early recovery
from alcohol use. Using Pender’s HPM, Graham defined perceived barriers as an individual’s perceptual challenges in participating in health-promoting behaviors. Graham recruited 50 women at
different stages of recovery in 12-step meetings from 32 sites across three states to complete a questionnaire about health-promotion activities. Graham found that the most significant barriers the
women faced to health promotion were financial constraints, fatigue, time management issues, low
self-efficacy, and communication problems. Graham concluded that a comprehensive approach,
including assessment of barriers and support for policies to reduce barriers, might help to encourage health-promotion activities.
Practice Application
A community health nurse, who is a faculty member at a nursing school, partners with an activities director at an apartment complex for economically disadvantaged families. The apartment
activities director is concerned with the numbers of renters (adults and children) who are sedentary. The activity director wants to work with the nursing faculty member to establish a weekly
family-oriented physical activity session at the apartment complex. The nurse understands that
engagement in health-promotion activities starts with understanding the families’ past experience
with physical activity, cultural values related to physical activity, perceived benefits and barriers
to participating in the sessions, and commitment to a plan of action. The apartment complex is a
tight-knit community of Hispanic families who interact socially on a regular basis. Prior to planning the sessions, the nurse hosts two evening family dinner meetings to discuss the aforementioned issues so that they can tailor the physical activity sessions to the families, thereby increasing
the likelihood of the families participating.
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Resilience
Vulnerable populations face varying types of adversity including, but not limited to, chronic health
conditions. Positive adjustment to adverse life experiences is termed resilience (Haase & Peterson,
2017). Haase and Peterson state that understanding resilience helps nurses to improve health outcomes, especially among at-risk populations.
Resilience has been defined as a dynamic concept occurring as a personal quality enabling
success, a process, and/or an intrinsic force that exists within individuals or groups (Richardson,
2002). Ahern’s (2006) concept analysis of resilience can describe key attributes of the concept. Although Ahern studied a population of adolescents, you can use the attributes of resilience Ahern
proposed to guide nursing interventions for populations across the lifespan.
Ahern (2006) defined the concept of resilience as a process that an individual undertakes to
adapt to adversity or risk by using personal characteristics, family and social support, and community
resources. In the context of adversity, Ahern defined risks as being either internal or external to the
individual. Ahern identified several attributes including individual protective factors (e.g., competence, coping ability, sense of humor, connectedness, and health risk knowledge) and sociocultural
protective factors (e.g., family connectedness and availability of community resources). Several of
the attributes, including competence, are subjective perception of abilities in dealing with adversity; the degree of adversity is also subjective and unique to the individual.
Application to Vulnerable Populations
Internal (e.g., chronic disease) and external (e.g., physical abuse) risks experienced by vulnerable
populations vary in degree and severity. Although adversity can be defined broadly, a thorough assessment of an individual’s or family’s knowledge of the health risk, perception of personal/family
competency, coping mechanisms, sense of humor, social support networks, and resources available in the individual’s or family’s community is important. You can design interventions to incorporate an individual’s or family’s key strengths and access to resources in the community that best
enable the individual or family to overcome adversity.
Research Example
Higgins, Sharek, and Glacken (2016) explored resilience processes among older lesbian, gay, bisexual, and transgender (LGBT) adults in Ireland. Using a qualitative exploratory design, Higgins and
colleagues conducted in-depth interviews with 36 LGBT adults. LGBT adults reported individual
protective factors including making a decision to accept yourself, courage to leave oppressive social environments, strength to let go and move on, and an optimistic outlook on life. Participants
reported sociocultural protective factors including experiencing affirming relationships with loved
ones, maintaining connections with other LGBT people, and accessing formal support systems.
Capitalizing on key strengths and access to resources is important in helping LGBT older adults
build resilience while facing adversity.
Practice Application
A nurse working in a public high school is planning interventions to address a recent act of violence on the high-school campus. The nurse wants to engage the adolescents and their families
in an intervention to promote personal/family competence in coping with the traumatic event.
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The nurse plans a series of support groups/debriefing sessions for the adolescents alone, parents
alone, and for families to encourage verbalization of fears and concerns within a supportive environment. The debriefing sessions will also be used for the adolescents and their parents to make
plans for how to continue to ensure safety on the campus using resources within the community.
Chronic Care
The chronic care model (CCM) is a population-based model that outlines a planned approach to
chronic disease care delivery. The goal of the CCM is to provide high-quality, comprehensive care
that helps to improve chronic disease management, mitigate complications of chronic diseases, and
improve health outcomes at the population level (Coleman, Austin, Brach, & Wagner, 2009). In the
CCM, chronic conditions are defined as any condition that requires ongoing adjustments by the affected
individual or family and continuing interaction with the healthcare system (Coleman et al., 2009).
The CCM has two major dimensions: community and health systems (Coleman et al. 2009).
Within the two major dimensions there are sub-dimensions including self-management support,
delivery system design, decision support, and clinical information systems. Self-management support, a sub-dimension of community, helps to empower individuals and families to take charge of
disease management through goal setting, planning, problem solving, and follow-up. The goal of
delivery system design is to deliver efficient, effective, evidence-based and culturally competent
clinical and self-management care including regular follow-up with the care team. Decision support helps to ensure that clinical care is based on patient and family preferences and values, in addition to evidence-based practice. Finally, clinical information systems help to organize patient data
in order to achieve effective, individualized care planning including open communication among
the stakeholders (e.g., patient, family, providers) and timely reminders for follow-up care.
Application to Vulnerable Populations
The CCM is the only population-focused model presented in this chapter. Providers working in a
community setting can use the elements of this model to design delivery systems within their practices that help to ensure patients and families receive care that supports self-management of chronic
disease. For vulnerable populations, the assurance of timely, continued follow-up care is critical.
Transportation issues, lack of ability to communicate with patients and families outside office visits
(e.g., lack of a phone), and language barriers can impede effective care delivery. Designing clinical
information systems that address vulnerable populations’ barriers to follow-up care is important.
Open communication, using the patient’s and family’s primary language preference, and decision
support incorporating a patient’s and family’s values may strengthen self-management of chronic
disease.
Research Example
Spoorenberg et al. (2015) conducted a grounded theory study of the experiences of community-living
older adults in the Netherlands who were receiving integrated care based on a combination of the
CCM and a population health management model. The integrative care program, Embrace, supported self-management, early detection of changes in health status, and prevention of health-related
problems. Twenty-three older adults who received Embrace for at least 8 months participated in
semistructured interviews. Spoorenberg and colleagues reported two central themes with regard to
participant concerns: experiences with aging (e.g., health struggles, increased dependency, decreased
References
85
social interaction, loss of control, and fear) and experiences with Embrace (e.g., relationship with
the case manager, interactions, and feeling in control, safe, and secure). Spoorenberg et al. concluded that fear of losing control and becoming dependent was the primary concern of the participants and that Embrace helped to increase feelings of control, safety, and security.
Practice Application
A family nurse practitioner (FNP) who runs a community clinic serving uninsured adults is concerned about the numbers of patients with type 2 diabetes who cancel their follow-up appointments. He determines that transportation issues, financial issues, and language barriers are three
common obstacles to follow-up care. The FNP uses the CCM to institute the following changes:
(1) incorporation of goal setting and problem solving during office visits (self-management
support); (2) assurance of the presence of an interpreter during office visits and routine use of
prescription assistance plans to enable patients/families to afford medications (delivery system
design and decision support); (3) partnering with a local charitable agency who will provide bus
vouchers for patients (clinical information systems); and (4) reminder phone calls the day before
the appointments (clinical information systems).
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Conclusion
This chapter presented eight middle-range concepts and theories. The middle-range concepts and
theories were contextualized for the care of vulnerable populations, and through examples you saw
how to use each concept or model in research and clinical practice.
References
Agency for Healthcare Research and Quality (2008). National healthcare disparities report 2008. Retrieved March 7, 2014,
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Chapter 7 Applying Middle-Range Concepts and Theories to the Care of Vulnerable Populations
Appendix 7-1 Summary Table
Concept/
Theory
Authors
Topic
Notes
Self-Efficacy
Kenzik et al.
(2016)
Association of receiving
treatment summaries
and care plans on selfefficacy for chronic illness
management among
cancer survivors
Descriptive study of 441 cancer
survivors across 5 states; greater
self-efficacy was reported after
receiving a verbal explanation of
follow-up care plans.
Adherence
Nokes et al.
(2012)
Increasing treatment of
self-efficacy to improve
adherence to antiretroviral
medications
Descriptive survey study of 1,414
U.S. adults diagnosed with HIV
on antiretroviral treatment; selfefficacy was a strong predictor
of adherence to antiretroviral
medications.
Change
Berhane,
Biadgilgn,
Berhane, &
Memiah
(2015)
Demographic and attitudinal
characteristics associated
with different transtheoretical
model stages about
involvement among married
Ethiopian men
Cross-sectional study of 770
married men; 62.3% of the men
were in the precontemplation
and contemplation stages.
Social
Support
Jacobson,
Lord, &
Newman
(2017)
Perceived emotional social
support as a possible
mediator between anxiety
and depressive symptoms
among bereaved older
adults
Longitudinal study of 250 older
adults who lost spouses; low
perceived emotional social
support predicted depression
symptoms 48 months after
bereavement.
HealthRelated
Quality
of Life
(HRQOL)
Choi et al.
(2015)
Longitudinal associations
among food insufficiency,
housing instability, and
HRQOL among adults living
with HIV in Ontario
For 3 years 602 adults with HIV
were followed; a significant
negative association between
food insufficiency and physical
and mental HRQOL, especially
among individuals with unstable
housing.
Appendix 7-1 Summary Table
Concept/
Theory
89
Authors
Topic
Notes
Health
Promotion
Model
(HPM)
Rosário et al.
(2013)
Impact of an elementary
school–based intervention
on the consumption of
low-nutrition energy-dense
foods and beverages
among 6- to 12-year-old
children
Randomized controlled
trial of 464 children aged
6–12 years from seven
Portuguese elementary schools;
children in the intervention group
who received a 6-month program
based on the HPM reported a
reduced consumption of lownutrition energy-dense foods
compared to the control group.
Resilience
Peltonen,
Quota, Diab,
& Punamäki
(2014)
The role of multilevel social
factors associated with
resilience among Palestinian
children in war
Descriptive study of 482
Palestinian children between the
ages of 10 and 13 years who were
exposed to war-related traumatic
events; a third of the children
were categorized as resilient
and 27% were categorized as
traumatized. Better friendships
were found among resilient boys.
Chronic
Care Model
(CCM)
Barletta et al.
(2017)
Impact of using the chronic
care model on a diabetes
care indicator with diabetes
outcomes among general
practitioners (GP) in Tuscany,
Italy.
Controlled before and after study
of 741 GPs who implemented
the CCM (control group of 1,820
GP); diabetes care indicators
were glycosylated hemoglobin,
eye exams, serum cholesterol,
microalbuminuria, and adherence
to statin therapy.
CHAPTER 8
Resilience in Health Care
and Relevance to Successful
Rehabilitation Among
Registered Nurses with
Substance Use Disorders
Sara Rowan and Jason Smith
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss the evolution of research on the topic of resilience.
2. Explain the connection between resilience and substance abuse.
3. Suggest ways in which family nurse practitioners can intervene with nurses with substance
abuse disorders.
▸
Introduction
Current estimates place rates of substance misuse, abuse, and addiction as high as 20 percent among
practicing registered nurses (RNs; Monroe & Kenaga, 2010). Cares, Pace, Denious, and Crane
(2015) suggested that RNs experience alcohol use, drug use, and mental illness at rates that mirror
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
91
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Chapter 8 Resilience in Health Care and Relevance to Successful Rehabilitation
or exceed those found in the general population. Kunyk (2015) reported that RNs are at a higher
risk than the general population for substance use disorders regardless of any special knowledge,
skills, or insights they might have as a result of their education and professional experiences. Regardless of whether the nurse’s substance use disorder is exposed or hidden, there are serious consequences and threats to the nurse, colleagues, managers, family members, and, most importantly,
patients. Early intervention and assistance from colleagues followed by an alternative-to-discipline
(ATD) program have shown the best rates of recovery and return to practice for RNs experiencing
a substance use disorder (Monroe & Kenaga).
Environmental factors including stress and the nursing profession’s work demands can often
contribute to substance use among healthcare professionals owing to a disrupted lifestyle from inconsistent work schedules, role strain, and high expectations at work (Cares et al., 2015). Additionally, nurses differ from the general population in that they work in an environment where they not
only have access to controlled substances but they also are exposed to death and dying (Epstein,
Burns, & Conlon, 2010). Personal risk factors for substance-related impairment among nurses include depression, burnout, history of sexual abuse, family history of depression, and alcoholism
(Cares et al., 2015). The epidemiology of substance abuse among nurses is broad, affecting RNs of
all genders, socioeconomic and educational backgrounds, cultural backgrounds, and all geographical locations (Rundio, 2013).
Substance use among RNs is a matter of public safety, putting both nurses and their patients at
risk (Cares et al., 2015). Patient safety is placed at risk when RNs with active substance dependence
practice because substance abuse–associated behaviors including intoxication, hangover, impaired
motor coordination, and faulty judgment may impair functioning (Kunyk, 2015). Kunyk found that
40 percent of the participants in a peer health assistance program for nurses with substance abuse
issues felt that their job performance was affected somewhat or a lot by their substance abuse. Additionally, over 25 percent of the participants said that patients were put at risk one or more times
because of their substance use (Cares et al.). Inaccessibility to patients and other staff, inappropriate or unfulfilled physician’s orders, incorrect charting, poorer quality of care, and increased patient
and family complaints are all potential safety risks that result from illicit substance abuse among
nurses (Epstein et al., 2010).
In addition to public safety risks, the professional image of nursing is threatened when nurses
have a substance abuse problem (Epstein et al., 2010). Further, nurses with active substance abuse
disorders endanger their health by increasing their risks of morbidity, impairment, disability, and
mortality associated with substance abuse disorders (Kunyk, 2015). RNs who abuse substances
become financial liabilities to their employers because of increased absenteeism, disability, worker’s compensation claims, decreased productivity, and increased turnover (Epstein et al., 2010).
Fortunately, RNs with substance use disorders have one of the highest rates of rehabilitation
among professionals (Fogger & McGuinness, 2009). With advances in treatment, substance use
disorders no longer need to end nursing careers. Researchers have confirmed high rates of recovery among nurses when monitoring, continuing treatment, and testing for relapse detection are
performed (Kunyk, 2015).
Alternative-to-discipline programs ensure the best outcomes and can be effective in assisting
nurses to recover from addiction rather than enforcing discipline (Monroe & Kenaga, 2010). Recovery has been demonstrated to be achievable and sustainable, with the goal of early detection
of nurses with substance abuse issues, followed by engagement in evidence-based treatment and
long-term monitoring programs (Kunyk, 2015). One of the primary benefits of the ATD approach is
a rehabilitation process. Recovering nurses can remain active in nursing and maintain their financial
status, which further supports their recovery (Fogger & McGuinness, 2009).
The Concept of Resilience
93
One concept that may help explain how nurses are able to successfully recover from substance
abuse is resilience. The available and existing literature on substance abuse among nurses, resilience
among nurses, and the concept of resilience were analyzed. We will discuss the concept of resilience pertaining to the presence of resilience as a factor impacting successful rehabilitation among
nurses with substance abuse problems next.
▸
The Concept of Resilience
Grafton, Gillespie, and Henderson (2010) narrated the evolution of the resilience concept by organizing existing literature into three chronologic categories: resilience as a set of characteristics, resilience as a dynamic process, and resilience as an innate life force. Initial inquiries into the concept
of resilience focused on defining resilience by identifying common characteristics among resilient
persons (Grafton et al., 2010). Grafton and colleagues stated that resilience was described according to protective factors, which were defined as “specific traits or attributes . . . that assist individuals to recover from and thrive despite adversity” (pp. 699–700).
The first wave of resilience research failed to reach consensus regarding protective factors in resilient persons. Therefore, no working theoretical definitions for identified resilience characteristics
emerged. Grafton and colleagues noted that the publications from this era resemble lists of characteristics without uncovering when, how, or why attributes are only found in certain individuals.
The second wave of research focused on reaching a consensus on protective factors and exploring the dynamic process of resilience (Grafton et al., 2010). Grafton and colleagues defined
the dynamic process of resilience as “a result of frequent disruption (adversity) and reintegration
(adaptation) wherein an individual displays positive adaptation despite experiencing adversity”
(p. 700). Researchers in the second wave of inquiry found that resilience was not simply a collection of characteristics but rather that protective factors common among resilient persons may be
derived from previous experience and/or taught (Grafton et al., 2010). Out of the second wave of
research, Grafton and colleagues constructed a working conceptual definition of resilience: “a dynamic process used by individuals to access resources to cope with and recover from adversity and,
therefore, able to be learned or taught” (p. 700).
According to Grafton and colleagues, the third and most recent category of resilience research
“sought to understand the source of origin of resilience as an innate energy or motivating life force
within an individual” (p. 701). They described the research in the third wave of resilience inquiry
as being focused on the motivation of resilient persons by examining the interaction between the
inner self and extrinsic factors. From the third wave of inquiry, a resilience metatheory emerged
and was described by Grafton and colleagues as “an innate resource (spirit, life source) within an
individual, exemplified by protective characteristics, enabling the individual to cope with adversity, as well as motivating the individual to engage in cognitive transformative processes to learn
from the experience and build greater resilience” (p. 701).
The common theme in all resilience research, even from its infancy, is the ability to recover and
rebound despite adversity or change (Earvolino-Ramirez, 2007). As research evolved, the notion
that protective factors do not guarantee positive outcomes became apparent. Earvolino-Ramirez explored the paradigm shift from resilience as a concept applied solely to children to a more universally applicable theory to explain why only some people, regardless of age, can succeed after facing
substantial challenges. Earvolino-Ramirez posited that the shift came as the result of participating in resilience-based intervention programs. The interventions readied individuals to reestablish
normalcy after disruption (Earvolino-Ramirez). However, interventions alone are not sufficient to
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Chapter 8 Resilience in Health Care and Relevance to Successful Rehabilitation
ensure positive outcomes after adversity. As discussed by Earvolino-Ramirez in the third wave of
resilience inquiry, there is a component of resilience that is inherent to certain individuals, commonly described in the literature as self-determination.
Self-determination is the innate belief of an individual that he or she can overcome any challenge, therefore, protecting the individual from feelings of hopelessness and despair during a time
of adversity (Earvolino-Ramirez, 2007). Self-determination, in isolation, is not enough to facilitate
resilience. Rather, self-determination allows individuals a more positive disposition when navigating an intervention program. Equally important is the presence of at least one positive relationship
or meaningful social support (Earvolino-Ramirez, 2007).
Early studies of resilience in children typically noted at least one positive adult relationship
(Earvolino-Ramirez, 2007). As Earvolino-Ramirez expanded research on resilience to include
adults, at least one positive relationship with another person remained consistent with positive
outcomes after adversity. Another common theme Earvolino-Ramirez identified in the literature
was the presence of enhanced coping mechanisms. Enhanced coping mechanisms include flexibility and a sense of humor (Earvolino-Ramirez, 2007).
Assumptions of the Concept of Resilience
The concept of resilience acts directly on the individual, with indirect effects on the family and
society. As explored previously, resilience is the sum of innate factors, positive relationships, and
learned experiences. To apply resilience to practice, a nurse practitioner assumes that an individual possesses innate factors (e.g., life forces, coping ability, self-determination, positive social relationships, and enhanced coping mechanisms). Another assumption is that the main catalyst for
resilience is adversity. In the absence of adversity, resilience is merely a personality trait and not
a motivating life force (Grafton et al., 2010). A final assumption is that a degree of autonomy exists within resilient persons. The ability to self-govern actions is almost synonymous with intrinsic
motivation. Therefore, resilience is closely intertwined with the enduring nursing value of autonomy.
▸
Alternative Theory for Understanding Substance
Abuse Among Nurses
Another healthcare theory that we may use as a foundation to explore successful rehabilitation among
nurses with substance use disorders is health promotion theory (McCullagh, 2017). Similar to the
concept of resilience, health promotion theory addresses degrees of self-efficacy, self-determination,
intrinsic motivation, and positive outlook as a catalyst for improved health outcomes. However,
health promotion theory does not address adversity as the required agent to induce change. In health
promotion theory, as McCullagh stated, an individual is concerned with “achieving a higher level
of well-being and self-actualization” (p. 228), and to a lesser extent, health protection via primary
prevention. In the substance abuse rehabilitation process, health promotion could be implemented
after the individual has achieved positive reintegration. During the initial adverse event, rebound,
and recovery, the concept of resilience is a better fit.
▸
Application to Nurse Practitioner Practice
Successful rehabilitation is not accidental and takes an extreme amount of effort and dedication.
Research regarding addiction among nurses has identified that positive relationships foster recovery
Application to Nurse Practitioner Practice
95
and reintegration back into the profession (Fogger & McGuinness, 2009). Resilience also identifies
the need for at least one positive relationship (Earvolino-Ramirez, 2007). Nurses are responsible for
narcotic distribution to prescribed individuals under their care. Thus, the nurse in recovery from addiction must possess self-determination. Self-determination is the feeling that you can overcome any
obstacle to succeed (Earvolino-Ramirez, 2007). Having access to narcotics is a large obstacle to recovery from addiction. Nurses recovering from substance abuse issues need to possess a firm belief that
they will be able to overcome this temptation and persevere with help from their social support system.
The prevalence of substance use disorders among nurses has implications for the nurse practitioner in both the colleague and the provider role. If the nurse is working closely with the nurse
practitioner, work relations and dynamics may be affected negatively. Behaviors often associated
with substance use among nurses include increased mood swings, being uncooperative with staff,
carelessness, complaints regarding poor patient care, and marked nervousness (Monroe & Kenaga,
2010). The nurse working while under the influence of substances could increase the risk for medication errors and impair nursing judgment, which would result in potential harm and poor outcomes for the patient. One researcher suggested that education and an awareness program could
improve abilities of workplace peers to recognize cues such as changes in nurses’ physical or emotional condition, the use of pain medications documented in patients’ charts, and repeated absenteeism and/or excessive tardiness (Cares et al., 2015).
If the nurse practitioner recognizes any of the aforementioned behaviors in a nurse colleague,
it may warrant reporting. If the nurse practitioner identifies substance use behaviors in a patient
or colleague, coaching on enhanced coping mechanisms could be a useful tool in conjunction with
other recovery therapies. Enhanced coping mechanisms are routinely demonstrated in resilient individuals (Earvolino-Ramirez, 2007).
The nurse practitioner may be either directly or indirectly impacted by these behaviors. While
the work relationship may suffer, an important role of the nurse practitioner is to be aware of the
risk for potential harm to patients. Nurses with substance use disorders may withhold controlled
substances from the patient, including narcotic pain relievers or benzodiazepines, for their own
use. As a result, patients may verbalize increasing complaints of pain or anxiety, and dissatisfaction with the provider.
Nurse practitioners have the unique opportunity to develop relationships with nurses as both
colleagues and as patients. A positive relationship between a nurse recovering from substance abuse
disorder and the nurse practitioner could promote a resilient outcome. As demonstrated throughout the literature, the presence of at least one positive relationship is needed to promote a resilient
outcome (Earvolino-Ramirez, 2007). As Fogger and McGuinness (2009) discussed in the case of
substance use, a positive relationship can aid recovery and reintegration of the nurse back into the
nursing profession. Establishing a positive relationship and helping others develop enhanced coping mechanisms are ways the nurse practitioner can promote resilience in others.
Finally, the nurse practitioner can be sensitive to nurse colleagues and patients they treat
with complaints of pain that may be recovering from substance use disorders. Pain management
among individuals recovering from substance use disorders can result in an ethical dilemma for
nurse practitioners when evaluating the use of narcotic pain management (Cooper, 2016). Persons
with a substance use disorder are less likely than others to receive effective pain treatment, as clinicians are concerned about opioid misuse. Cooper suggested several clinical practice interventions, which were guided by the ethical principles of autonomy, beneficence, nonmaleficence, and
justice to address concerns about opioid misuse. The ethical principle of beneficence was recommended as the primary goal when treating patients in pain with a history of a substance use disorder. Cooper recommended that the nurse practitioner screen for addiction risk appropriately and
utilize pain management consultants and addiction therapy specialists as available (Cooper, 2016).
96
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Chapter 8 Resilience in Health Care and Relevance to Successful Rehabilitation
Conclusion
There is a strong correlation between the successful rehabilitation of nurses overcoming substance
abuse, and the profession’s overall characteristic of resilience. Resilient nurses display much-needed
qualities such as intelligence, self-determination, self-confidence, resourcefulness, and flexibility
that can assist them in difficult situations (Brennan, 2017). Nurses have among the highest rates
among professionals for effective and long-lasting rehabilitation with substance abuse disorders.
Furthermore, ATD programs have been shown to yield the best results and lower levels of relapse. Earvolino-Ramirez’s emerging theory of resilience supports resilience-based intervention
and prevention programs. When applying resilience to the successful substance abuse rehabilitation, Earvolino-Ramirez’s work strengthens the evidence that nurses have higher rates of success
in recovery.
The association is furthered supported when examining Earvolino-Ramirez’s contention that
resilience is strengthened with the presence of self-efficacy and enhanced coping mechanisms.
Hart, Brannan, and de Chesnay (2014) described nursing research conducted to understand the
phenomenon of resilience in nurses. Nurses who were able to recognize and identify their own situational concerns, reframe, adapt, and look forward to a time when the current situation might
be altered were typically associated with higher levels of resilience (Hart et al., 2014). Additionally,
Hart and colleagues stated that nurses who buffered their current situation by considering the future and using coping mechanisms to aid in moving through were described as those who exhibited greater resilience.
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CHAPTER 9
Afghan Women
Refugees: Application
of Intersectionality
Feminist Theory
Brenda Brown
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss briefly the history of the feminist movement in the United States.
2. Compare and contrast intersectionality and intersectionality feminist theories.
3. Explore intersectionality feminism as it relates to the Afghan women refugees in the
United States.
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Introduction
This chapter discusses one group of refugees (Afghan women) in the United States and uses the
intersectionality feminist theory to explore identifiers that may lead to this population’s marginalization. Although other disciplines have numerous studies about refugees, the nursing literature is
greatly lacking. Juliene Lipson, a nurse anthropologist, along with her colleagues, has conducted
several studies focusing on the Afghan women refugees in California. Nurses may be one of the first
healthcare professionals refugees encounter when they resettle in the United States. Thus, nurses
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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need to know and understand the various refugee populations in the geographical areas where they
practice. I will use some of the findings from my dissertation for this discussion.
▸
Refugee and Immigrant Crisis
The refugee crisis has become global and is not likely to be resolved soon, if ever. Statistics from the
United Nations High Commissioner for Refugees (UNHCR, 2016) reported that in 2015 a record
65.3 million people worldwide, or 39,976 people per day, were displaced, either within their native
countries or as asylees and refugees. The breakdown of the 65.3 million was: asylees, 3.2 million;
internally displaced persons (IDPs), 40.8 million; and refugees, 21.3 million. Afghanistan, from
1980–2014, was the country with the largest number of outgoing refugees, and it now ranks third in
the world. At the opposite end of the continuum the United States remains the primary host country
for refugees, asylees, and resettled refugees from all countries, including Afghanistan. The number of
asylee claims in the United States rose from 36,800 in 2013 to 121,200 in 2014, a 44 percent increase.
A report from the Migration Policy Institute (MPI) by Zong & Batalova (2015) stated that for fiscal
year (FY) 2015, the United States resettled 69,933 refugees. As one solution to this massive refugee
crisis, the Obama administration proposed increasing the number of refugees the United States allows each year from 70,000 in FY 2015 to 85,000 in FY 2016 and 100,000 in FY 2017. Additionally,
the number of Syrian refugees admitted would be at least 10,000 for FY 2016.
The Soviet takeover in 1979 marked the beginning of the Afghan refugee exodus. The initial
destination for most refugees was the refugee camps in Pakistan and Iran, where some still reside.
Other Afghan refugees have made their way to Western host countries, such as the United States,
and reside as asylees or immigrants. Within the United States, Georgia is one of the top ten states
for refugee resettlement (Zong & Batalova, 2015) and one of the seven states with the most Afghan
refugees and asylees. Within Georgia, metropolitan Atlanta, especially the city of Clarkston, is
home to the largest population of Afghan refugees and asylees (“Clarkston, Atlanta, GA,” 2016).
My dissertation’s focus was a phenomenological study of the lived refugee experience of Afghan
women in the southeastern United States. A phenomenological approach to a study is not usually
grounded in a specific theory, but I used the intersectionality feminist theory as a viewpoint from
which to conduct the study. In consideration of the complexities of the Afghan women’s refugee
experience this theory seemed the best fit for the study.
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History of Feminist Movements
First Wave
The initial, or “first-wave,” feminist movement in the United States began in the late 18th century
when Mary Wollstonecraft published her book, Vindication of the Rights of Woman, in 1792 (Head,
2013; Rupp, 2006). The primary issue for first-wave feminists was to campaign for the recognition of women as human beings and not the property of men. Historically, in the United States and
Europe, laws governing material possessions, land, and money favored and benefited men. Women
had few ownership rights except for personal belongings. Fathers managed their daughters’ valuable possessions such as investments and real estate until marriage at which time husbands took
over. Moreover, firstborn daughters were not entitled to the same inheritance rights that firstborn
sons were (Braunstein & Folbre, 2001; McWhorter, 2009).
History of Feminist Movements
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Further, for most of this era women were not allowed to vote or hold public office, so their political opportunities were limited. The consensus among men, and some women, was that women
could not possibly understand the complexities of political issues and debates. Therefore, the public aggressively opposed the Twentieth Amendment of the U.S. Constitution, which gave women
the right to vote. However, the amendment was ratified on August 18, 1920, and the first-wave
feminist movement essentially ended (Bielkiewicz, 2011; Longo & Dunphy, 2012; Rodgers, 2005).
Second Wave
The civil rights movement of the 1950s and 1960s addressed the inequality of rights between the
two major racial groups in the United States—Black and White Americans (McWhorter, 2009).
During the civil rights movement many White women were key advocates for equal rights for
Blacks (Hooks, 2000). Thus, the second-wave feminist movement was a natural outcome of the
civil rights movement. This movement took place from the late 1960s until the early 1970s (Rupp,
2006). Radical feminism was the initial ideology of the second-wave movement and was probably
the most recognized by the public.
Overall, radical feminists viewed the dominant patriarchal system of the United States as the
source of women’s oppression. Male supremacy in politics, society, science, medicine, and other institutions prohibited women from having rights and privileges equal to those the men enjoyed. The
word radical indicates a major change from a foundational norm. Hence, radical feminists proposed
changing the patriarchal foundation of government to eliminate the societal conventions and hierarchy that favored men and oppressed women. These feminists believed the system arising from
the revolution would support the equality of men and women in all aspects of life (Echols, 1989;
Einspahr, 2010; Head, 2013; Hooks, 2000).
Paradoxically, radical feminism had a commonality with the White patriarchal capitalist society that these women were fighting. The radical feminist movement was made up of White,
middle- to upper-class, educated women who wanted freedom from patriarchy. They wanted
to work outside the home and have a career, and they assumed what they experienced as oppression was what all women experienced, including Black women and women living in poverty. These
White women may have had Black women working as domestic servants but failed to acknowledge the hypocrisy of the situation. Freedom and equality, from the perspective of poor and Black
women, differed greatly from what White women proposed. The agenda of the White radical
feminists did not include issues relevant to women outside their circle (Echols, 1989; Einspahr,
2010; Hooks, 1984, 2000). Essentially, radical feminists were practicing other forms of oppression—
racism and classism. (Collins, 1999, 2007, 1990; Gillis, Howie, & Munford, 2007; Hooks, 1984, 2000;
Howard-Hassmann, 2011; Longo & Dunphy, 2012; Mohanty, 2003, 2008; Reilly, 2011).
This paradox and hypocrisy were effectively portrayed by the two lead actresses—one White
and one Black—as the housewife and her maid in the movie The Long Walk Home (Bell & Pearce,
1990). Odessa Carter, the Black maid, had joined the bus boycott in Montgomery, Alabama, in 1955.
She chose instead to walk the long distance from her home to the home of a White family where she
was employed as a maid. The woman of the home, Miriam Thompson, had sympathy for Odessa but
was forbidden by her husband to assist Odessa. Nevertheless, Miriam did help by driving Odessa
part of the way to and from their homes. During this time Miriam and Odessa became friends of a
sort considering the societal and political limits of the Deep South in the 1950s. Miriam played the
role of many frustrated young White women at the time who were stay-at-home wives and mothers, controlled by husbands. Yet, she also recognized her life was very good compared to Odessa’s,
who was essentially working to care for two families. At the end of the movie Miriam finally defied
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her husband’s control to stand in line with Black men and women being physically assaulted by the
White men of the town. Miriam and Odessa held hands and sang along with the rest of the Black
citizens, in support of each other and in resistance to the dominant power of White men.
Two more second-wave feminist movements were based on liberal and social ideologies. Liberal feminism tended to be more left-wing than radical feminism and asserted that women should
have personal and political autonomy. However, societal norms and policies often prevented
women from achieving autonomy and freedom. Liberal feminists promoted freedom from violence and threats of violence; freedom from patriarchal laws and values; and freedom to have options and make choices for themselves (Howard-Hassmann, 2011). Additionally, they believed the
state should be responsible for assisting women to attain equality and autonomy by enacting policies and laws that supported women’s issues (Baehr, 2013). Liberal feminist theory maintained
that women’s work as wives and mothers was underappreciated and relegated them to a dependent and vulnerable situation. Other issues on the liberal feminist agenda included equal rights for
women in jobs, fair wages, education, and marriage as a partnership of husband and wife rather
than a dominant-subordinate relationship.
Social feminist theory drew from Marxist values. Members of this movement viewed capitalism as the major source of oppression. The focus of social feminism was the oppression of women
as well as the oppression of other individuals or groups marginalized by race, socioeconomic class,
gender, and sexual preference. Therefore, social feminists battled not only for women’s rights and
equality but also for those of other subordinate and oppressed groups (Echols, 1989; Howie &
Tauchert, 2007).
However, these movements, liberal and social feminism, still failed to recognize and advocate for
women of color, women living in lower socioeconomic status (SES), and women living in developing countries (Alexander-Floyd, 2010). A common fault among Western feminists was to stereotype women from developing countries as weak helpless victims all having the same needs (Hooks,
2000; Manganaro & Alozie, 2011; Russo, 2006). Such ideas were unfair to those women who were
as diverse in their needs and circumstances as women in the United States. Moreover, imposing the
ideas and values of Western feminism on these women, without respect for their cultural, ethnic, religious, and social values and beliefs, paralleled the paternalistic and patriarchal domination Western women had challenged for decades (Mohanty, 1984, 2003, 2008; Hooks, 1984, 2000). One goal
of Western feminists was to create a global sisterhood, but they had little to no comprehension of
the unique problems facing women in developing countries. A universal feminist theory cannot be
the answer to the problems facing Black and third-world women (Alexander-Floyd, 2010; Collins,
1990, 1999, 2007; Crenshaw, 2008). The second-wave feminist movement faded into the background
for lack of unity and agreement among its members and even within the same ideological camps.
Third Wave
Feminist ideologies that accepted and valued diversity among women came into being in the 1990s,
marking the beginning of the third-wave feminist movement (Lotz, 2007). One of the foremost
standpoints of the third-wave feminist movement has been the acknowledgment of and appreciation
for women in the margins of Western society, women in developing countries, and other oppressed
and marginalized groups (Lotz, 2007; Rodgers, 2005). Their unique life experiences and needs are
finally being legitimized by the newer generation of Western feminists. From the third-wave feminist movement emerged intersectionality and transnational feminist ideologies. In the following
sections I will examine intersectionality and transnational feminism in more depth and establish
their suitability to my study population.
Intersectionality Feminist Theory
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Intersectionality Feminist Theory
The concept of intersectionality was not new to feminism though its development into feminist
theory by Kimberlé Crenshaw did not occur until 1989 (Carastathis, 2013, 2014; Crenshaw, 1991;
Falcóna & Nash, 2015; Rogers & Kelly, 2011). Intersectionality feminist theory initially focused on
Black women and was grounded in the belief that gender was only one factor that caused oppression
and marginality for Black women. Race was equally implicated as a contributing factor. Moreover,
the intersection of gender and race magnified the oppression because Black women were marginalized by both identifiers. This intersection of race and gender left Black women at the bottom of
the human hierarchy where they suffered oppression and marginality as both women and as Blacks.
Crenshaw has written extensively about intersectionality as a feminist movement. An exhaustive discussion of her works is beyond the scope of this text, but I will point out the most salient aspects. Crenshaw (1989) argued that Black women’s experiences do not fit into a neatly prescribed
framework based on one type of oppression. Nor are their experiences simply a sum of two types of
oppression. Instead, the intersection of race and gender multiply the oppression and discrimination
of Black women. From the perspective of race, Black women’s issues were not White women’s issues,
so the feminist movement did not benefit them. One example of the difference in issues was the
choice to work outside the home. The educated middle- and upper-class White women wanted to
work outside the home, but Black women rarely had a choice about working outside the home.
They had to work out of necessity. From the perspective of gender, Black women were subordinate
to and oppressed by both White and Black men.
Crenshaw (1989) related two court cases that demonstrated how the intersection of race and
gender created a no-win situation for Black women plaintiffs. General Motors (GM) and Hughes
Helicopters, Inc., were sued by Black women for discrimination regarding salaries and employment/
promotions opportunities. In the GM case the court’s decision was that Black women could not be
considered a distinct group who received special treatment. The women could not sue for sex discrimination because women—White women—had been hired by GM. Their race discrimination
suit was dismissed and ordered to be consolidated with another race discrimination suit against
GM. This decision by the court essentially rendered the race discrimination lawsuit by the Black
women an invalid grievance. The court’s statement was that Title VII was not meant to create new
classes of individuals who deserved protection because they were marginalized by reason of more
than one characteristic.
In the Hughes Helicopter case, the primary representative of the plaintiffs was a Black woman,
Moore, who accused the company of race and sex discrimination by not promoting Black women to
supervisory and administrative positions. However, because the representative was a Black woman,
the court decided she could not rightfully represent all women working for Hughes in a race and
sex discrimination suit because White women worked there, too. Additionally, Moore was only permitted to use statistics that specifically related to Black women’s promotions at the company. The
limited statistics Moore could present to the court were not significant enough to prove discrimination against Black women was a valid complaint. The overall implication of these court decisions
was that the norm for sex discrimination was based on White women’s experiences. Likewise, the
norm for race discrimination was based on Black men’s experiences. Either way, Black women remained marginalized because antidiscrimination laws refused to acknowledge the intersection of
two factors defining Black women’s unique experiences.
Crenshaw (2008) explored how the intersectionality of gender, race, politics, culture, citizenship status, class, and language affected women who were in domestic violence situations and/or
were the victims of sexual assault. Stereotypes of Black women often implied they were inclined to
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desire sex or be immoral and promiscuous and deserved to be raped. Such stereotypes have greatly
hindered legal justice and human rights for Black women. Likewise, immigrant women are often
battered by husbands who may be immigrants or American men. Immigrant women usually do not
speak English and are limited in their ability to seek assistance from shelters for battered women or
to navigate the legal system. Barriers for immigrant women include increased dependence on their
husband’s income, less access to a phone, limited transportation, fear of deportation, and the restraints of cultural values. All these circumstances intersect to hinder escape for immigrant women
living in domestic violence situations and keep them oppressed and marginalized.
Patricia Collins is another Black feminist scholar who understood the importance of intersectionality in Black women’s experiences. Collins (1990; 2007) discussed the suppressing of Black women’s knowledge by the dominant group (White men), which in turn permits the dominant group to
remain in power. Yet, knowledge and understanding achieved by Black women have merit and deserve acknowledgment by society. Like Crenshaw, Collins related ways in which the oppression of
Black women in the United States persisted—politically, academically, and socially. Feminist ideologies did not include Black women in the group of educated middle- and upper-class White women,
which had become the norm for all women. Black women were stereotyped as Jezebels, mammies,
Aunt Jemimas, prostitutes, and welfare mothers, a situation that Hooks (1984) also noted. Collins
observed that Black women in places such as the Caribbean Islands, Africa, Asia, and Europe faced
the same struggles to be noticed and valued that Black women in the United States did. Further,
women of other ethnicities in the United States—Latina, Asian, and Native American—found fault
with Western feminism because of its hegemonic population of White women. Even women who
conducted research about women tended to enroll middle- and upper-class heterosexual White
women as participants. Essentially research about Black women, women of color, women living
in poverty, and women who did not match the norm was nonexistent, a problem likewise documented by Rogers and Kelly (2011).
Collins (1990) and Hooks (1984) urged Black women in all roles, from housewife to church
member to academician, to further their cause by using their collective experiences and the knowledge gained from those experiences to create a Black feminist critical theory and movement. Though
the women would undoubtedly face challenges, they would never attain any measure of status and
equality unless they fought for it. Additionally, Collins recognized that any member of a subordinate group whether by sexual orientation, culture, gender, religion, and/or class is affected by the
intersection of these factors. However, the key to success is building communities and developing
unique knowledge and standpoints that arise from the intersection of their identifiers and their
experiences in context.
The need for feminists to engage in democracy and for democracy to become a motivating
force in the feminist movement was the topic of discussion in Eschle’s (2002) scholarly paper. She
argued that the feminist movement and global democracy have been operating separately when
they should be in tandem. Eschle pointed out that Black women in the United States and women
in developing countries were still being ignored in the overall restructuring of patriarchal societies. The norm for feminism remained the White middle-class women whose beliefs, values, and
expectations were quite different than those of minority women in the United States and women
in developing countries. Eschle also examined the intersection of various types of power and their
impact on this group of women. Global economics, cultural aspects, and the use of state to effect
gender-based political and societal changes are multidimensional powers to be faced in the pursuit of gender justice. Further, Eschle recommended that power, democracy, equality, economics,
and feminism be examined in context, in the unique situations in which Black women and women
from developing countries live.
Intersectionality Feminist Theory
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Intersectionality of race, class, gender, language, and culture has created difficulties for minority individuals and groups in the education arena. Orelus (2012) discussed this issue and pointed
out ways in which students and educators have suffered oppression and been pushed to the margins of society. While Orelus’s focus is on justice in education, from grade school through graduate programs, including both students and faculty, he argued, like the previous authors, that the
intersections of various identifiers of subordinate groups multiply the oppression and marginalization they experience. Both Collins (1990) and Hooks (1984) discussed the difficulties facing Black
women to have their knowledge recognized as having as much merit as the knowledge of White
women and men.
Viruell-Fuentes, Miranda, and Abdulrahim (2012) along with Rogers and Kelly (2011) examined the concept of intersectionality related to health care and bioethics as a major impact on the
health of minority populations and fairness and justice in research. Rogers and Kelly noted how
the intersection of multiple types of discrimination perpetrated oppression and subordination in a
minority population and formed the power relation with the dominant group. Fraser (2007) likewise discussed multiple axes of gender, religion, politics, and race that may intersect and their impact on distributive justice for and recognition of marginalized women.
Transnational Feminism
Transnational feminism is based on the premise that feminism in developing countries does not
necessarily fit with the ideals of Western feminist thinking. As previously mentioned, some Western feminists have perceived women in developing countries as helpless victims in need of rescuing
by women from developed countries. Transnational feminism acknowledges that women in developing countries cannot be lumped together and stereotyped. For example, a wealthy woman in
India would not have the same issues as a woman of a lower caste living in poverty (Dua & Trotz,
2008; Mohanty, 1984, 2003, 2008).
Mohanty (2003) expounds on her ideology regarding transnational feminism by first calling
to attention the need for “feminism without borders” (p. 2). She clarifies this concept as not being “border-less feminism” (p. 2) rather that boundaries do exist among countries, races, cultures,
and politics and these boundaries can create fears and differences and conflict. However, feminism
without borders can cross over these boundaries to bring social justice to all persons. Mohanty envisions feminism as including men and women who have freedom, autonomy, agency, and choice.
Furthermore, men and women can live healthy, creative, secure lives in which equality, well-being,
and enjoyment are obtainable.
Heywood and Drake (2007), Russo (2006), Ackerly and Attanasi (2009), Reilly (2011), and
Howard-Hassmann (2011) used transnational perspectives to examine several issues that women
in developing countries face as feminism becomes global. Health, legal rights, human rights, cultural practices, gender, and economics are some of the global issues that we must consider from the
context of nation, religion, and government so we can apply the most appropriate feminist thinking.
Employing Western feminist ideology without accepting and respecting the differences in women
is not effective and could even be detrimental to the welfare of women in developing countries.
One example of the need to respect the difference between Western feminist values and women
in other countries is the use of contraception in Muslim-dominated countries. A strong Muslim
belief is that women must bear as many children as possible, regardless of her health or the reasonableness of having multiple children. Women often begin having children in their early teens when
their bodies are not developed enough to endure labor and delivery. Multiple long-term complications can occur, including infant and maternal death (van Egmond et al., 2004). Thus, the first step
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in promoting contraception is to educate the men about the health risks to their wives with bearing children so young and having large numbers of children. Huber, Saeedi, and Samadi (2010)
reported on their work among Afghan adults to practice contraception. They did have success but
emphasized the importance of gaining the trust of the men, husbands, and mullahs, before initiating this program.
▸
Application of Theories to Population
The reason for choosing intersectionality feminist theory for the study population of Afghan women
refugees in metropolitan Atlanta is because it corresponds with the situation in which these women
now live. They have multiple identifiers, any one of which places them into a minority and marginalized category. Further, those identifiers intersect to create a situation in which oppression
and marginalization are strong possibilities. The identifiers include refugee status, financial issues,
female gender, non-English speaking, Muslim, and their status as foreigners from a country not
well understood by Americans. The next section discusses the identifiers and how they impact Afghan women refugees’ well-being.
A refugee (Immigration Policy Center [IPC], 2015) according to Section 101(a)42 of the Immigration and Nationality Act (INA) “is a person who is unable or unwilling to return to his or her
home country because of a ‘well-founded fear of persecution’ due to race, membership in a particular social group, political opinion, religion, or national origin.” Additionally, refugees may leave their
native countries because of extreme, even life-threatening, circumstances such as war, poverty, and
natural disaster. The Afghan women certainly meet the criteria of refugee status. They have lived with
decades of war and the resultant poverty. Many Afghans have faced actual or threatened persecution
or execution of themselves or family and friends (Barfield, 2010; Tober, 2007; Welsh & Brodsky, 2010).
Refugee Status
Refugees are not citizens of the resettlement country, in this case the United States, and for that
reason may be viewed as a threat to or strain on the American economy, healthcare system, educational system, and housing. Refugees are cared for by federal funding, and some state funding,
for approximately 8 months, at which time they must be able to support themselves (Burr, Gerst,
Kwan, & Mutchler, 2009; “Access to Care,” 2011).
Often, American citizens believe that refugees are coming to the United States to take advantage of handouts and remain supported by government welfare programs. The reality is quite different because refugees are looking for a better life, which includes employment, education, and
contributing to society (Fix & Passel, 1994; Mohanty, 2006). The data from interviews of the Afghan
women refugees affirmed this point. The reason that all the women gave for leaving Afghanistan
was to have a better life and future for their children and to live in security.
Financial Issues
Refugees seek employment as soon as they have proper identification. However, they often take
lower-paying jobs that have few to no benefits and struggle to support themselves because they enter the United States with little to no education or job skills (Pandey & Kagotho, 2010; Viladrich,
2012). As a result, refugees become trapped in a lower socioeconomic status, may have little or
no healthcare access, may be living in high-crime neighborhoods, and lack transportation and
Application of Theories to Population
105
good-quality grocery stores. Richardson and Norris (2010) discussed race and ethnicity as factors
that impact minority populations, which included poor access to health care and living in less than
desirable neighborhoods.
The husbands of the women interviewed work long hours. One man was a physician, and another was an engineer in Afghanistan. But for various reasons they are unable to obtain jobs in
those capacities in the United States. Therefore, they have had to work two or three jobs to support their families. Additionally, having a job entails reliable transportation, and the husbands do
not have the income or credit to purchase anything but cheap vehicles, which may not be reliable.
Gender
Worldwide, being female has been a centuries-long reason for suffering oppression and marginalization as discussed previously. The Afghan women refugees lived in a patriarchal society in
Afghanistan and still encounter that mind-set in the United States. Although these women now reside in the United States, they are still living in a male-dominated family situation. Moreover, many
Afghan women in the United States must work for the family income to be sufficient, and this role
change can be difficult for the Afghan men to accept. Along with working outside the home, the
women must continue to fulfill all the duties of a wife and mother. Cultural beliefs and the frustrations and stresses of immigration may lead to situations of domestic violence (Lipson & Dibble,
2009; Rostami-Povey, 2007).
The women in the study did not express any concerns about domestic violence. Only one
woman works outside the home, but her husband is also employed full time. However, I have spent
a great deal of time with Afghan families and have noticed a definite delineation in the roles of
men and women. The women are responsible for the home and the children, a job requiring constant attention and labor.
Language
Language has been shown to be a significant barrier for refugees (Edberg, Cleary, & Vyas, 2011).
Not speaking English marginalizes the Afghan women in health care, employment, transportation,
and other necessary life activities. Seeking health care from a provider who does not understand
the refugees’ native language can result in awkward and embarrassing situations. The refugees may
not be able to explain their health problems nor understand instructions from the healthcare provider (Paylish, Noor, & Brandt, 2010).
Only one woman among the study participants is fluent in English. The others understand and
speak English by degrees ranging from minimal to fair. Another common theme from the interviews was the language barrier. One woman had only a few years of school in Afghanistan, so she
cannot read and write her native language. Another woman gave an account of a medical situation
that became emergent likely because of the language barrier. The women want to learn English but
often don’t have the opportunity.
Religion
Islam is a religion much different than the Christian-based doctrines in the United States, and
Muslims are frequently misunderstood and viewed suspiciously (Hollander, 2010; Rashid, 2011).
Americans stereotype Muslims as terrorists and by association the Afghan people. Islam is a religion based on Allah as the all-powerful God and the teachings of his prophet, Mohammad.
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The tenets of Islam are clean living, helping others, and pleasing Allah (Hollander, 2010; Rashid,
2011). As with any religion, believers of Islam run the gamut of strict fundamentalists to more
liberal-minded individuals. However, the strict fundamentalists are the ones who receive the
most media attention for their cruelty to women and nonbelievers. News clips of suicide bombers and terrorists sawing off the heads of captives are seen worldwide so no wonder the image of
Muslims is negative.
Country of Origin: Afghanistan
Furthermore, Americans identify Afghanistan as the place where Osama bin Laden hid after 9/11,
which is another reason they equate Afghanistan with terrorists. However, the clear majority of
Afghan people are not associated with terrorism or with radical and fundamental Islamic laws.
They are moderate Muslims. Another false idea that many Americans have is that Afghanistan is
a Middle Eastern country. It is not, and the Afghan people would be highly insulted to be called
Middle Eastern. Thus, these false ideas, supported by media, make the Afghan refugees a target for
ridicule and persecution. After 9/11 many Afghan people living in the United States became targets of slurs and even physical violence.
None of the women in the study reported experiencing prejudice or problems because of religious or ethnic reasons. However, all of them live in large metropolitan areas where refugees and
immigrants from many countries reside. They are not hindered from attending mosque and move
about freely in their neighborhoods.
Related Research
A study by Dossa (2005) was an endeavor to give voice to the suffering of Afghan women refugees who resettled in Vancouver, British Columbia. Her primary questions related to the role and
responsibility of anthropologists in researching and writing about populations who are generally
marginalized and oppressed by developing countries’. The study encompassed salient aspects of
the study with the Afghan women refugees in the southeastern United States. The Dossa study discussed both feminist theory and the intersection of identifiers that could result in the marginalization and oppression of the women. The identifiers included gender (female), age (older), minority
status (Afghan refugee), native language, culture, and Western stereotypes of Afghan women as helpless victims. These identifiers intersected to create a marginalized living situation for the women.
They were perceived as ignorant and weak. Employment opportunities were scarce so they lived
in poverty. They could not afford access to adequate health care or other necessary resources such
as education. They felt invisible to a society that had opened its doors to the refugees but failed
to welcome them. The lived experience of life in Afghanistan, in refugee camps, and as resettled
refugees was neither understood nor appreciated by society at large. The women were viewed in
isolation from, rather than in the context of, the experiences and events that comprised their existence. As Dossa noted, the women had been wounded by their native country and were now being
wounded by the host country.
Yet, amid oppression and marginalization the women demonstrated resilience and resourcefulness. One woman had found a library within walking distance of her home and learned the bus
route to a nearby town, so she could shop. She also recruited assistance from young Afghan girls,
strangers to her, when she had appointments at the clinic. After a time, she was able to make the appointments on her own, speaking Hindi she had learned in a refugee camp. The women had joined
groups, attended an improvised mosque, and maintained contact with relatives in Afghanistan.
Conclusion
▸
107
Implications for Nursing
The nursing profession is linked closely to feminism. Both have a history of advocating for social justice and supporting the oppressed and marginalized populations (Chinn & Kramer, 2011; Longo &
Dunphy, 2012; Polit & Beck, 2012; Rodgers, 2005). Early nurse leaders in the United States accomplished a great deal for people who were disregarded by upper-class society. Lillian Wald founded
the Henry Street Settlement in New York City and started the Visiting Nurse Service of New York.
Mary Breckinridge began the Frontier Nursing Service offering perinatal services for women in
remote Appalachia.
Additionally, nurses and the nursing profession have had their own challenges to rise above
oppression. Because women have made up the majority of nurses for decades, they have worked
in the shadows of physicians, often unappreciated and underpaid. In the same manner minority
populations have been oppressed and marginalized by the dominant hegemony of patriarchy, capitalism, and colonialism, not only in the United States but in many developing countries. The dominant hegemony has been White males for most societies and governments that have marginalized
and exploited women and other vulnerable populations (Rodgers, 2005).
However, the first- and second-wave feminist movements neglected many women because
they did not fit in with the dominant group of White heterosexual educated middle- to upper-class
White women. In a similar manner, nursing theories of the 1950s to 1970s were usually developed
by a select group of nurse educators and academicians who were no longer involved in the clinical
practice of nursing (Chinn & Kramer, 2011; Longo & Dunphy, 2012; Polit & Beck, 2012). The positioning of nurse researchers and academicians at the top of the profession mirrored a patriarchal
system and generated a gap between nursing theory and nursing practice.
Initially third-wave feminist movements worked to enhance the lives of Black women but widened
to include women in poverty, women of color, and women from developing countries. The intersections of several identifiers such as race, culture, and ethnicity were recognized as multiplying the oppression and marginalization of other women. Additionally, third-wave feminism ideology valued the
unique characteristics and contributions of women who have been neglected by earlier movements. As
nursing research has expanded, more qualitative studies are being undertaken. These studies allow the
patients’ perceptions, emotions, thoughts, and cultural and ethnic concerns to become the focus. The
U.S. population is rapidly diversifying, and nurses must respond by striving to understand, appreciate, and practice within the context of those for whom we care. Our patients now have ever more intersections of identifiers that can and do multiply their likelihood of marginalization and exploitation.
▸
Conclusion
This chapter has explored the identifiers of Afghan refugee women living in metropolitan areas
in the southeastern United States. These identifiers intersect and create marginalization for them.
Nurses who work with the population must recognize the multiplicity of identifiers and understand
the context from which the women have emerged to establish a mutually trusting and respectful
relationship. Caring for the needs of these women may present challenges to Western nurses who
have not been exposed to the Afghan refugees’ cultural, ethnic, religious, and political beliefs. Further, language presents another barrier to establishing a professional relationship. Nurses must be
educated about Afghan women refugees and be willing to practice in a manner congruent with
their values and beliefs. The goal is to assist and empower these women to meet the challenges of
the intersections and establish a life in the United States that is productive and gratifying.
108
Chapter 9 Afghan Women Refugees: Application of Intersectionality Feminist Theory
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CHAPTER 10
A Holistic Approach
to Women’s Employment
Christie Emerson
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe a theory that supports qualitative research using life history methodology.
2. Explain the relevance of the theory to the research.
3. Evaluate the theory using criteria from Chinn and Kramer (2015).
▸
Introduction
According to Meleis (2012), “A theory is an organized, coherent, and systematic articulation of a
set of statements related to significant questions in a discipline and communicated as a meaningful whole” (p. 29). A theoretical framework places a study and its data interpretation with ideas
that are more abstract than the specifics of the study itself (Casanave & Li, 2015). The purpose of
this chapter is to describe and evaluate a theory that supports qualitative research using life history methodology to study an Omani woman who grew up during the Omani renaissance, chose
a career in nursing, then subsequently became a nurse leader. Criteria from Chinn and Kramer
(2015) will inform the description and critical reflection of the theory.
▸
Background and Overview of Research
The Sultanate of Oman (hereafter referred to as Oman) is a country in Southwest Asia, on
the southeast coast of the Arabian Peninsula. Oman is an Islamic country, with Arab culture
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
111
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Chapter 10 A Holistic Approach to Women’s Employment
and tribalism influencing all aspects of society. Prior to 1970, Oman was isolated and virtually unknown to the outside world (Chatty, 2000; Haddad & Esposito, 1998); however, since the
accession of His Majesty Sultan Qaboos bin Said to power in 1970, Oman has undergone a period
of rapid modernization known as the Omani renaissance (Al-Lamky, 2007; Al-Sinani, 2012;
Goveas & Aslam, 2011). The cultural practices before 1970 that prohibited the full participation
of girls and women in life and education have changed significantly. During the 1970s the government adopted a policy of gender equality in education, which has prepared women for all
levels of the Omani workforce. A basic statute of the country proclaims equal rights and opportunities for all (Al-Lamky, 2007).
Although several studies (Al-Lamky, 2007; Alsawafi, 2016; Chavali, 2016; Kemp & Madsen,
2014; McElwee & Al-Riyami, 2003) have investigated the cultural shift toward enlisting Omani
women in the workforce, there is a gap in the scholarly literature regarding why Omani women
choose particular career paths. Additionally, there are no studies specific to nursing careers.
Because the nature of nursing work is contrary to traditional Arab gender ideology and codes
of female behavior, the nursing profession in the Arab Gulf countries has a somewhat low
status (Al Awaisi, Cooke, & Pryjmachuk, 2015; Kemp & Zhao, 2016; Maben, Al-Thowini, West,
& Rafferty, 2010). Despite the low status, in 2014, only 59 percent of nurses in Oman were
Omani nationals, with the rest being migrant nurses (Ministry of Health, 2014). Although the
percentage of national nurses in Oman is higher than in other Arab Gulf countries (Al-Riyami,
Fischer, & Lopez, 2015), the National Healthcare Policy of Oman has placed a priority on the
replacement of migrant nurses with Omani national nurses in the Omani nursing workforce
(Ministry of Health, 2014).
This study will explore why Omani women choose to join the workforce and pursue careers in
nursing, despite the low status and the clash with cultural norms, and what sustains them in those
careers. The study will use a qualitative design that includes life history methodology.
Theory Description
Spierings (2016) proposed a theoretical framework for understanding women’s employment that
is appropriate to this research. The theoretical framework is not explicitly named but is described
as a holistic approach to women’s employment. Spierings’s (2016) theory is built on various
approaches to understanding women’s employment in Arab countries; however, it is not restricted
to only that context.
Scholars from diverse disciplines (economics, sociology, political science, gender studies,
anthropology, and religious studies) have contributed to the knowledge of women’s employment.
The most common approach relates employment to the sociocultural context of women, for
example, culture, education, economic development (Abalkhail & Allan, 2016; Afiouni, 2014;
Besamusca, Tijdens, Keune, & Steinmetz, 2015; Kemp & Zhao, 2016; Littrell & Bertsch, 2013;
McElwee & Al-Riyami, 2003; Moghadam, 2005; Omair, 2008; Tlaiss & Kauser, 2010, 2011). For
example, Besamusca et al. (2015) focused on four domains of country characteristics known
to affect rates of female participation in the labor force that are found in previous research.
Those domains were: economic conditions causing the necessity and opportunities to work, education, family care demands, and gender ideologies that govern the extent to which women
are encouraged or discouraged from working. Muslim ideology is a second common approach used for understanding women’s employment in Arab countries (Haghighat, 2005;
Marmenout & Lirio, 2014; Metcalfe, 2007; O’Sullivan, 2015; Sidani, 2005). These commonly
Background and Overview of Research
113
used approaches attribute employment to external forces and do not account for internal drivers.
A few studies acknowledge the contribution of personal factors to women’s employment decisions (Gallant & Pounder, 2008; Javadian & Singh, 2012; Kemp & Zhao, 2016).
Purpose
According to Spierings (2016), the goal of the holistic framework is to explain women’s employment position. Spierings (2016) defines work as, “work positions that are both gainful in terms of
cash paid for labour or products and lead to a more or less regular income” (p. 43). The principles
of this framework are applicable to women’s employment and attempt to increase the understanding of what influences employment in general (Spierings, 2016).
This theory focuses on paid and consistent employment because of its higher empowerment
potential; however, it does not maintain that paid employment always leads to empowerment. In
reality, some positions might harm a woman’s empowerment based on the job. According to Spierings
(2016), different kinds of paid employment have different empowerment effects.
Assumptions
Spierings (2016) explicitly states that the framework “takes diversity and complexity as its starting
points, but does not take a relativist or postmodern position in rejecting generalization whatsoever” (p. 40). Instead, the framework tries to reconcile these two ostensibly contradictory positions.
Historically, feminist scholars criticized many studies for overgeneralizing all women as the same, or
generalizing results based on the study of males to apply to non-males. According to Spierings (2016),
this same problem of overgeneralization is occurring with Muslim countries and people (particularly women). This problem has led to the suggestion by some scholars (Bottero, 2000) that diversity
in research is the benchmark; however, Spierings (2014, 2016) argued that neither diversity nor
homogeneity are a priori truths. “Acknowledging this idea of generalizable diversity implies that both
contextual and individual characteristics shape women’s position and that the context also shapes the
impact of certain structures, processes, and people” (Spierings, 2016, p. 41). According to Spierings
(2016), many factors influence women’s employment. There is not one factor or group of factors that
are more important than other factors, “even though some point at Islam to be one” (Spierings, 2016,
p. 41). This suggests a complex world, meaning that all domains or elements (e.g., economy, gender,
religion, class, policies) are linked to each other, such that one cannot be studied without considering
the other. Additionally, the question of how they are related also becomes important (Spierings, 2016).
Structure
The conceptual model of this framework (see FIGURE 101) places the woman at the center of the
model. Five conceptual levels, represented by concentric circles, surround the woman. At each level,
there are potential agents and structures that are important explanatory factors influencing women’s
employment. The five theoretical levels are the individual woman, the household, the community,
the country, and the globe. To understand how this variety of contextual factors at each level shape
women’s choices, the factors are placed in groupings of causal circumstances or conditions that
influence the probability the woman will work. These conditions are needs, values, and opportunities
(Spierings, 2016). An explanation of the theory concepts, relationships between the concepts, and
the conditions follows.
114
Chapter 10 A Holistic Approach to Women’s Employment
Opportunities
ua
l
Employment
G
lo
ba
l
Co
u
nt
ry
Co
m
m
un
ity
H
ou
se
ho
ld
In
di
vi
d
Needs
Values
Societal needs,
women’s opportunities
FIGURE 101 A holistic framework for explaining women’s employment
Spierings, N. (2016). Women’s employment in Muslim countries: Patterns of diversity. London, England: Palgrave Macmillan, p. 46
Concepts and Definitions
Women’s Employment
Women are employed within a context. The context includes both agents and structures. The woman
is not the only agent. Partners, employers, and politicians are agents that each make decisions that
might shape a woman’s choices and position. The primary agent is the woman, who lives within
certain structures. Spierings conceptualizes the change from not being employed to employment
as involving three decisions:
■
■
A woman makes the choice (to enter the labor market or start a business/to accept a job or
order) based on her assessment of the desirability to do so.
In determining the desirability, the woman’s decision is influenced by (her perception of)
whether other agents in her surroundings regard (her entering the labor market or starting a
business/accepting a job or order) as desirable.
Background and Overview of Research
■
115
A woman’s potential customer/employer will pay for the product that a woman offers based
on that person’s assessment of the desirability of doing so. If the overall desirability to pay for
the woman’s product is higher than the desirability of not doing so, the potential (customer/
employer) will choose to do so (Spierings, 2016, pp. 46–47).
The three decisions summarize the relationship between the woman as agent and the context, consisting of structures and other agents.
Conceptual Levels
According to Spierings (2016), the previous approaches to women’s employment only cover a certain segment of the hypothetically relevant influences on employment. Spierings argues that there
is a need to differentiate the influences into five levels. Agents, structures, and important explanatory factors are positioned within each level.
The Individual Woman
The individual woman’s attributes are important in the decision-making process. She holds ideas
about her place in society. She might feel the need for self-development, or she might feel the need
for income to provide for basic needs (Spierings, 2016). Additionally, each woman has innate talents that might influence her decisions.
The Household
At the household level, the woman takes care of daily life. This is where she discusses decisions
and where bargaining with partners, parents, children, and close extended family and friends takes
place. This level is also the setting where beliefs about women’s roles within the household influence decisions. Characteristics of the individual household (e.g., family structures, economic situation, and the views of household members) also likely influence decisions.
The Community
The actual job opportunities and the norms of society influence a woman’s opportunities and decisions at the community level. The norms and opportunities in the local area are the most important
because decisions about traveling (or moving) are costly and impacted by gendered norms of mobility.
The Country
The fundamental element of countries is that they are core political units. The state has the capability of policy making. Political structures, gender, and/or economic policies vary among countries and can have substantial impact on the position of women. Policies can also be made at the
local level but are most often situated at the national level.
The Globe
The last contextual level influencing women’s employment is the international level. These influences include monetary world politics and international trade and investments. Global activities
can directly and indirectly influence women’s employment. For example, international monetary
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Chapter 10 A Holistic Approach to Women’s Employment
agreements can affect national policies that can influence women’s employment, and international
conflict can destroy opportunities in the labor market.
The theoretical assertions of the conceptual levels can be summarized as follows:
■
■
The context influencing women (individual level) and their employment has four major levels
as described.
The strongest influence on the chance of the woman becoming employed is with contextual
characteristics at the level closest to the individual woman (Spierings, 2016).
Relationships Among Levels
Spierings (2016) conceptualizes four different types of relationships among the levels: the direct
top-down influence, the indirect top-down influence, multilevel spuriousness, and the embedding
effect (see FIGURE 102). In the top-down relationship, a factor at a higher level directly influences a
woman’s employment at the individual level. For example, national laws that prohibit women from
working certain hours or in certain jobs directly influence women’s employment. Another example of top-down influence from the Arab Gulf countries is the cultural need for women nurses to
take care of women patients, which influences opportunities for women.
Indirect top-down relationships occur when changes at a higher level affect lower level characteristics that influence employment. For example, government policies to increase localization
of the workforce increase opportunities for employment at the community level and thus influence opportunities for women.
Spurious multilevel relationships occur when characteristics at a lower level are also related to
characteristics at a higher level, and it seems that the higher-level factor influences women’s employment when it is actually the high-level factor influencing a lower-level factor that then influences
employment. It might also be a case in which a lower-level factor influences women’s employment,
which might also be responsible for the higher-level phenomenon. An example of this is a woman
who lives in a region with several cities (urban versus rural area) and actually resides inside one of
the cities. In this example, job opportunities because of living in close proximity to businesses in
the city are the ones that count, not living in a region with several cities. The lower level variable,
residing in one of the cities, influences the woman’s employment and it also influences the variable of living in an urban area.
Because factors at lower levels (e.g., household, community) are imbedded in higher level
contexts (e.g., country, nation), they can be context specific, and vary through an embedding
effect. This does not mean a factor that has a strong impact in one context is absent or opposite
in the next; it might just be stronger within a certain level, depending on contextual factors. As an
example, the influence of gender norms on women’s employment might depend on the community context in terms of strictness of ideas about the role of wife and mother. If these are stricter, it
is likely that the difference in employment between married women and unmarried women will
be large (Spierings, 2016).
Conditions
Spierings (2016) conceptualizes the influences on the decisions at the core of women becoming
employed can be understood as needs, opportunities, and values. They are the underlying causal
mechanisms. The different quarters of the circle depict these three conditions. They partially overlap. Values can constitute an effect on their own, but they also affect needs and opportunities. The
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Background and Overview of Research
ld
ry
nt
A: Direct top-down influence
B: Indirect top-down influence
Values
Values
ld
ity
un
al
lo
b
G
G
lo
b
al
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nt
ry
m
Co
m
ry
nt
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u
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m
m
un
ity
H
ou
se
ho
ld
ho
H
ou
se
Employment
al
du
ivi
d
In
Opportunities
Employment
al
du
ivi
d
In
l
ba
lo
G
Societal needs,
women’s opportunities
Needs
Societal needs,
women’s opportunities
Opportunities
Needs
G
lo
ba
l
Co
u
nt
ry
Co
m
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ity
ou
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ld
ity
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un
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Employment
l
ua
vid
i
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In
Opportunities
Employment
l
ua
vid
i
d
In
Needs
Values
Opportunities
Needs
Values
Societal needs,
women’s opportunities
Societal needs,
women’s opportunities
C: Multilevel spuriousness
D: Embedding effect
FIGURE 102 Four forms of multilevel interrelatedness
Spierings, N. (2016). Women’s employment in Muslim countries: Patterns of diversity. London, England: Palgrave Macmillan, p. 51
fourth quadrant represents societal needs and the individual woman’s opportunities (where all
three conditions come together).
“Needs refers to the things or actions that are considered necessary in order to reach the goals
people or groups of people have set for themselves” (Spierings, 2016, p. 55). Needs can either prevent
women from seeking employment or encourage employment. While needs might make a woman
seek employment, whether she becomes employed ultimately depends on whether she has the skills
to perform available jobs. Suitable and accessible job opportunities must also overlap with societal
need for female labor. Values include norms of behavior as well as personal and household priorities.
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▸
Chapter 10 A Holistic Approach to Women’s Employment
Critical Reflection
According to Chinn and Kramer (2015), “Critical reflection contributes to understanding how well
the theory relates to practice, research, or educational activities” (p. 199). Their approach to theory
evaluation purposefully does not imply normative criteria because a judgment of a theory’s value
depends on the purpose for which the theory is used. Chinn and Kramer (2015) suggest the following questions for critical theory reflection:
■
■
■
■
■
How clear is the theory?
How simple is the theory?
How general is the theory?
How accessible is the theory?
How important is the theory?
These questions will be addressed regarding Spierings’s (2016) theoretical framework.
Clarity
Semantic Clarity
The narrative description of the theoretical framework contains definitions for all concepts on
the conceptual framework. The definition for women’s employment is explicit with examples;
however, definitions for the conceptual levels and the conditions are implicit within general
descriptions of the concepts. While it is not visible on the conceptual framework, empowerment is discussed in relation to the purpose of the framework; however, empowerment is not
defined and needs further clarification. The terms agency and structure as broad approaches
to women’s employment are neither implicitly nor explicitly defined. Aside from the very specific definition of women’s employment, other definitions reflect general traits, which limits clarity according to Chinn and Kramer (2015). For example, the implicit definition of the
individual woman is:
As discussed above, the individual woman is the primary agent. The woman’s individual
characteristics are important in the decision-making process because she will consider
her chances on the labour market, because she holds certain ideas about what her role in
society is, and because she might feel the need for self-development or for an income to
provide for food and other basic needs. (Spierings, 2016, p. 48)
This definition could be further clarified by giving examples of individual characteristics; however,
for use with my research, perhaps general definitions are better because examples could potentially
limit my thinking about a concept.
Semantic Consistency
Variation in uses of the concepts in the theory can cause a lack of clarity (Chinn & Kramer, 2015).
In this framework, most concepts are used consistently throughout; however, the conceptual levels
are further categorized into micro and macro levels based on the use of those categories in previous research. Spierings (2016) uses micro and macro somewhat interchangeably with the specific
conceptual levels. This is confusing and thus decreases clarity.
Critical Reflection
119
Structural Clarity
Spierings (2016) is very clear that previous approaches to women’s employment have failed to connect explicitly the different levels of influences. He asserts that this identification of the interrelatedness between the levels is what sets this framework apart from other approaches. I found some
of the descriptions of the relationships between the concepts difficult to understand as described
and further use of examples from previous research could have been helpful in clarifying the relationships; however, even though the descriptions are somewhat confusing, the concept of relationships among levels is an important reason this theory fits this research. The purpose of life history
research is to tell how life events influence individuals and how they made sense of these events
(Wiseman & Whitefield, 2007).
Structural Consistency
Consistent use of structural form within a theory is referred to as structural consistency (Chinn &
Kramer, 2015). This theory consistently uses embedded concentric circles with conditions that influence whether a woman will work in the background. This conceptualization is consistent throughout.
In summary regarding the clarity of this theory and its use in my research, while the broad
scope makes certain aspects ambiguous, it allows for the generation of new ideas at all levels. The
relationships among levels in the framework are an important fit with my research because I am
seeking to tell how life events influenced an individual woman’s employment from her perspective.
Simplicity
The simplicity of a theory is determined by parsimony in the number of elements in the theory
without sacrificing the meaning of the theory (Chinn & Kramer, 2015). While Spierings’s (2016)
theory is relatively complex (i.e., five conceptual levels within four conditions), it is parsimonious
in combining concepts from scholarly research on women’s employment into broad categories.
My research will likely not add any new elements to the theory, but it has the potential to provide
knowledge about relationships among the elements.
How General Is the Theory?
The extensiveness of the theory’s scope and purpose determines the generality of the theory. You
can apply a general theory to a wide range of situations (Chinn & Kramer, 2015).
The conceptual levels and the conditions of influence on employment are all appropriate to this
research. The purpose of this theory applies to all women in all contexts; however, while it includes
all influences on the likely employment of a woman, the theory does not address influences on
decisions regarding the type of employment. My research will focus on influences regarding
employment as a nurse; therefore, this is a limitation to the guidance offered by this theory.
How Accessible Is the Theory?
“Accessibility addresses the extent to which empiric indicators for the concepts can be identified
and to what extent the purposes of the theory can be attained” (Chinn & Kramer, 2015, p. 205). In
the description of the concepts and conditions of this theory, Spierings (2016) makes thorough use
of empiric indicators from prior research to explain the concepts, which is important because the
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Chapter 10 A Holistic Approach to Women’s Employment
theory is to be used to guide research. The theory purpose, to explain women’s employment position, is extremely broad, but it is also attainable through continued research.
How Important Is the Theory?
The importance of this theory has broader significance than just nursing, but it is important to
nursing because in most of the world, nurses are predominantly women (Abou Youssef et al., 1997);
therefore, understanding influences on women’s employment is a starting point to understanding
women’s employment as nurses. The theory’s basic assumptions of diversity and complexity are
sound and invite research using both quantitative and qualitative methodology.
▸
Conclusion
Although Spierings developed this theoretical framework for understanding women’s employment
from outside the nursing discipline, it is an appropriate theoretical framework to use as a starting
point for the research on the life history of an Omani woman and nurse leader. My research will go
beyond just the influences for employment in general. I will explore one Omani woman’s internal
motivations, as well as the influences that led her to employment as a nurse.
A primary reason this encompassing framework is appropriate for this study is that the study
design will use life history methodology. “Implicit in life history is the understanding that it is a
holistic perspective of an individual, gained through consideration of his or her experiences across
the lifespan” (Wiseman & Whitefield, 2007, p. 111). According to Spierings (2016), existing theories related to women’s employment are not holistic as to the relationship among different levels,
do not show relationships between general ideas and the factors determining participation, and do
not allow ways to determine whether important explanations might have been omitted.
The assumptions of diversity and complexity in this theory fit with the perspective from which
I will approach my research. Spierings’s (2016) concept of generalizable diversity, which suggests
that both contextual and individual characteristics affect women’s position and that the context
influences certain structures, processes, and people, is congruent with what I believe to be the basic
truth regarding women’s employment. The assumption of complexity, that all aspects of an individual’s life, and the systems that surround them, are interrelated in unknown ways, also aligns with
my beliefs about women’s employment. The conceptual levels and conditions in this theory are
broad enough to use as a starting point for my research; however, I will purposefully remain open
to hearing statements that might be outside the conceptual levels and conditions defined by this
theory. The generality of this theory as well as the similarity of purpose make this theory a good
fit for use in this research.
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UNIT II
Research
Research is the process of going up alleys to see if they are blind.
—Marston Bates
© RichLegg/ E+/ Getty Images
CHAPTER 11 The Boys on the Porch: Life Among
Previously Homeless Men . . . . . . . . . . . . . . . . . 125
CHAPTER 12 Validation of Fluid Intake Tracking System
Designed for Heart Failure Patients . . . . . . . . . 135
CHAPTER 13 A Systematic Review of Cardiomyopathy
and Peripartum Mortality in the
United States . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
CHAPTER 14 Life Beyond Movement: A Life History of
a Male Quadriplegic. . . . . . . . . . . . . . . . . . . . . . 161
© Bartosz Hadyniak/ E+/ Getty Images
CHAPTER 15 Overcoming Breastfeeding Challenges:
A Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
CHAPTER 16 Adult Family Relationships After
Childhood Maltreatment and Parental
Substance Use or Mental Disorder:
Pursuing an Ethics of Care . . . . . . . . . . . . . . . . . 187
CHAPTER 17 HIV Prevention Education . . . . . . . . . . . . . . . . . 197
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© MachineHeadz/ iStock/ Getty Images
CHAPTER 11
The Boys on the Porch:
Life Among Previously
Homeless Men
Rosemary Donley
OBJECTIVES
At the end of the chapter, you should be able to:
1. Describe three causes of homelessness.
2. Articulate three theoretical approaches to addressing vulnerability in homeless populations.
3. Explain why veterans make up a large group of homeless men.
▸
Introduction
I live at St. Joseph House of Hospitality (St. Joe’s), a residence for previously homeless men
located in the Hill District of Pittsburgh. Overlooking the Monongahela River as it enters the city
of Pittsburgh, the Hill is a colorful old neighborhood that has been home of successive generations
of immigrants. If you watched television in the eighties, you may remember Hill Street Blues. The
setting of this prime-time TV series about urban community policing featured Pittsburgh’s Hill
District. Although St. Joe’s was on Bedford Avenue at the time of the series, I do not remember it
being featured on the show. However, the men of St. Joe’s are as colorful and interesting as their
neighborhood.
This chapter examines vulnerability through the eyes of a group of residents at St. Joe’s, the
boys on the porch. The boys on the porch are the most observant, engaged, and informed residents
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
125
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Chapter 11 The Boys on the Porch: Life Among Previously Homeless Men
at St. Joe’s. Newcomers and those who have lived there for many years begin and end their days on
the porch, the entrance to St. Joseph’s House of Hospitality.
The boys are late middle-age men from all walks of life. Racially, socially, and ethnically diverse,
they have different educational, social, and religious backgrounds and interests. The residents of
St. Joe’s are not easily placed in common demographic or descriptive categories. They are everyman.
What they have in common is that their lives’ journeys brought them to St. Joe’s.
The Residents of St. Joe’s
Who lives at St. Joseph’s House of Hospitality? About a third of the residents are Vietnam veterans. This is not surprising because veterans comprise about 47 percent of the nation’s homeless
(National Coalition for Homeless Veterans, 2009). Some Vietnam veterans were on the streets for
many years. Many suffer from what Tick (2013) called “soul wounds,” moral injuries associated
with what they saw, did, or failed to do while they were in combat in Vietnam. Sherman (2015)
also spoke to spiritual pain among veterans from the Iraq and Afghanistan wars. Like their counterparts from the Vietnam War, these veterans are seeking to reconcile their sense of goodness with
their behavior during war.
Veterans at St. Joe’s have the most access to social and health benefits because they are eligible
for many U.S. Department of Veterans Affairs (VA) programs, notably health care, case management, and access to the Housing and Urban Development (HUD) VA supportive housing vouchers
(HUD-VAS) (National Coalition for Homeless Veterans, 2009). Some have other veterans’ benefits. All have access to the local VA hospital or clinics affiliated with the University of Pittsburgh.
Social workers and case workers from the local VA work with the staff at St. Joe’s to find jobs and/or
independent housing for veterans.
Another group of residents struggle with a chronic brain disease, addiction. Although these
residents are not actively engaged in drug or alcohol use, they know and experience the cravings
of recovering addicts. Veterans compose a subgroup of residents who have experienced addiction.
St. Joe’s, a protective environment, does not allow drugs or alcohol to be brought on its campus or
consumed there. Residents who violate this policy are asked to leave. Some violators of the alcohol
and drug policies have been barred from the property.
Another third of the residents live with chronic mental illness. Many of these men have symptoms of their mental illnesses and/or display side-effects from a long-term use of psychotropic
drugs. Veterans are a subgroup of men diagnosed with mental illness. The afflictions of the men
with mental illness are apparent. Some speak openly about their depression; several residents talk
or sing to themselves.
A small group of the residents came to St. Joe’s when their mothers or sisters died or could no
longer care for them. These men are the senior residents, having lived at St. Joe’s for 20 or 30 years.
St. Joe’s mission is unique; it is a residence for previously homeless men. Founded in July
1937 on the principles of Dorothy Day’s Catholic Worker Movement and directed by Monsignor
Charles Owen Rice, a controversial Catholic labor priest, it began as a soup kitchen on Wylie
Avenue in the Hill District. The following year, the House of Hospitality moved to Tannehill Street
in the Hill and opened a shelter for men who needed places to sleep as well as hot meals. In 1974,
the House of Hospitality moved to its present location on Bedford Avenue, which was formerly
Roselia Maternity and Foundling Hospital operated by the Sisters of Charity of Seton Hill (Sisters
of Charity of Seton Hill, n.d.). The sisters continued to live and work at St. Joe’s; several homeless women also came to live there. When Bishop Wright appointed Monsignor Paul Bassompierre as director in 1952, members of the St. Vincent de Paul Society became a sustaining part of
Introduction
127
St. Joe’s (“Paul Bassompierre,” 1985). In 1982, the Diocese of Pittsburgh turned its management
over to Catholic Charities of Pittsburgh, part of Catholic Charities USA (Catholic Charities of
Pittsburgh, 2016). Catholic Charities USA has diverse programs along the housing continuum to
prevent homelessness, including 201 shelters, mortgage assistance, and foreclosure and income
assistance (Catholic Charities USA, 2014).
St. Joe’s is a four-story brick building on a campus with a large yard, a pavilion, a vegetable garden, and a tennis court. There are squirrels, birds, and wild cats who sometimes are adopted by the
men. It has 60 private rooms, lounges, small kitchenettes, offices, a large dining room and kitchen,
a chapel, a laundry room, storage facilities, and an elevator. In the last several years, the building
and bathroom facilities have been renovated to make them more accessible to handicapped residents and staff. The building is now wired for Internet and cable access. At night, a professional
security guard sits at the front desk and makes rounds throughout the residence. New rules or
reminders about old rules are posted on the elevator. The boys on the porch watch the neighborhood
and everyone’s comings and goings.
It is evident at St. Joe’s that poverty and/or a lack of affordable housing are not the only causes
of homelessness. Although it has changed locations and management over the years, St. Joe’s mission is spiritually and culturally united to the vision of Dorothy Day, Father Charles Owen Rice, the
Sisters of Charity of Seton Hill, Monsignor Bassompierre, and the St. Vincent de Paul Society. Given
their history and ethos, it is not surprising that St. Joe’s policies and practices are unique among the
shelters and residences for homeless persons in Pittsburgh.
The men at St. Joe’s are older than typical shelter residents. They are middle age (over 55) and older
men with limited incomes. They can care for themselves, manage their medications or treatments,
and pay rent based on a sliding scale. While there are no criteria specifically related to physical health
status, residents at St. Joe’s must be free from use/dependence on drugs and/or alcohol. Each resident
must be able to live peacefully in a group setting and manage his addictions and/or have some control over his mental health problems. Fighting, possession of weapons, or other violent behaviors are
not tolerated. Some residents have significant physical problems, and many take psychotropic medicines and/or are under treatment for their psychiatric conditions. Some attend Alcoholics Anonymous (AA) meetings and/or recovery groups at St. Joe’s, at the VA, or in the city.
Each man has a private room with a lock. St. Joe’s residents are not required to leave the residence
in the morning or stand in line to claim a bed at night. The National Law Center on Homelessness
and Poverty (2014) points out that behaviors such as falling asleep, standing still, or sitting down,
legal when done privately, can be criminalized when they occur in public by people who have
nowhere to go. The men at St. Joe’s no longer have to leave their resting places in the mornings. They
have three home-cooked meals each day, a wide range of programs, and special treats and entertainment from community and church groups. Lounges on each floor have cable TV, and there is a
computer room and computer classes. The men have access to coin-operated washers and dryers,
weekly linen service, a small store where they can buy snacks and toilet articles, and a clothing room
where they can select slightly used clothing. Religious services are held on weekends and there is a
bible study group. The men are assisted in person-to-person relationships by a full-time staff, case
managers from the VA, and a former VA nurse who volunteers 1 or 2 days a week. Spiritual care and
support are provided by priests and ministers of local churches. The men are encouraged to seek
preventive health services, notably immunizations and foot care, and attend programs that address
addiction. Some are outpatients at LIFE Pittsburgh, a Medicaid managed-care group, or at VA clinics. Once a month, there is a house meeting and a welcome celebration for new residents and residents who will celebrate birthdays during the month. Some residents work at St. Joe’s or in the city,
and a few go to school. Some own cars, parking them in the parking area in the front of the building.
128
Chapter 11 The Boys on the Porch: Life Among Previously Homeless Men
Port Authority buses stop near the residence. Each man signs out/in when he leaves and returns to
the house. He does not need to tell anyone where he is going.
▸
The Men on the Porch
Perhaps it is easier to understand the vulnerability of previously homeless men by meeting some
of the men. James is a 78-year-old White man who is short of stature; he is developmentally challenged. He came to St. Joe’s when his mother died over 30 years ago. His days are rather ordinary;
he has a routine and a special chair in the front parlor. He watches who comes and who goes. He is
popular with the men. They look out for him and call him Little James. One of the men takes his
order for the store each week. It always includes paper towels and oatmeal cookies. The manager
shops for him and James always pays for his order before he receives it. Last summer, James became
suddenly ill and was transported to the emergency department of the closest hospital. Because of
privacy rules, it was difficult for the men on the porch to find out what was going on. There were
discussions on the porch about James. The men said that James had cancer; they thought it was
stomach cancer. He was very sick and was frightened. The hospital where James was a patient was
not far away. The case manager and a few of the men on the porch decided to visit him. They found
James crying and curled up in a hospital bed. When he realized that his friends were there, he began to sob. He told them he was going to die. They learned that James had colon cancer and was
scheduled for surgery. As James cried, his visitors looked on sadly; the case worker had tears in her
eyes. One of his visitors, a leader on the porch, got up and went over to his bed. He put his hand on
James’s knee and asked, “James, do you know where you are?”
James said no.
“Kenny said you are at Mercy Hospital, the best hospital in Pittsburgh. The doctors and the
nurses will not let you die.”
James sat up in bed. He asked Kenny if what he had just said was true. Kenny did not hesitate,
and said, “James, you are going to get better and come back to St. Joe’s.” James heaved a great sigh
of relief and began to talk with his visitors. James survived the surgery. He went to a skilled care
facility to learn to walk again and recover his energy and strength. He never quite mastered the care
of his colostomy, although he tried. Fortunately, the surgeons were able to close the colostomy and
restore the integrity of his colon. James came home to St. Joe’s and resumed his routine.
▸
Vulnerability
Vulnerability is a term used to describe persons who are economically and/or socially disadvantaged. They may be members of minority racial, ethnic, or religious groups; they may lack adequate
health insurance, safe housing, reliable sources of food, or access to health care, the social determinants of health (Centers for Disease Control [CDC], 2017). Age is also a determinant of vulnerability. Infants, young children, pregnant women, and the aged are always included in classifications
of vulnerable people. Sexually transmitted diseases, HIV/AIDS, mental illness, addiction (Aday,
2001), or conditions that compromise the immune system and threaten a person’s well-being are
frequently noted in the literature about vulnerable populations (DANIDA, 2000). Shi and Stevens
(2015) suggest that vulnerable populations are disadvantaged, lack privilege, or are of low social
class. Flaskerud and Winslow (1998) characterize vulnerability in terms of diminished autonomy,
poor quality of life, and increased morbidity.
Social Capital of the Men at St. Joe’s
129
Supporters of the Affordable Care Act have argued that lack of health insurance increases vulnerability (Center for Health Care Strategies [CHCS], 2014). Grabovschi, Loignon, and Fortin (2013)
posit a relationship between vulnerability and health disparities. Flaskerud et al. (2001) analyzed
articles published in the nursing research literature over five decades (1952–2000) that discussed
health disparities among vulnerable populations: persons of color, those living in poverty, those
marginalized by their immigration status or sexual preferences, those with diverse ethnicity and/
or religious practices, and those with other marginalized social statuses. Homelessness was not a
dominant category in the literature that was reviewed.
French sociologist Pierre Bourdieu (1986) introduced the notion of capital into the discussion
of vulnerability. In his analysis of power, Bourdieu explained that vulnerable people lack power as
measured by their levels of economic, social, and cultural capital. Aday (2001) borrowed Bourdieu’s
notion of capital to identify and describe social capital (family structure, marital status, membership in voluntary organizations and social networks) and human capital (level of education, occupation, work status, income, and housing) in her work to lessen vulnerability.
▸
Social Capital of the Men at St. Joe’s
Although James had a family who cared about him, families are rarely mentioned by the men at
St. Joe’s. Some speak lovingly of their parents, especially their mothers, but they rarely discuss brothers, sisters, spouses, or children. The absence of family engagement was discussed when Peter, one
of the men on the porch, had a cardiac arrest. He was taken to the nearest hospital and placed on
life support. No one could find his next of kin. A former lieutenant colonel in the Air Force, Peter’s
record noted that he was married and had a daughter. He had no will and had not designated anyone to speak for him if he were not able to make his wishes known. The county eventually hired
investigators, but his family could not be found. After several weeks, the hospital was allowed to
discontinue life support.
While this example is extreme, it portrays some of the men’s social isolation. The men at
St. Joe’s are not joiners; many have lost church affiliations, contact with their families, and their
former way of life. A few are active in AA and attend regular meetings at St. Joe’s or in the city.
The notable exceptions are the veterans who identify with their branch of service and with the VA.
The men at St. Joe’s have their own support systems. They rely on each other and on some current or former staff members. Several weeks ago, I admired Leo’s sweater. The weather had changed
and his sweater looked warm and new. Leo patted the sweater and said Mary gave it to me. He then
extolled Mary’s virtues. “She is a good girl. She cleans my room and takes care of me. She came here
as a young girl, got married and had kids. She is a good girl.” He then became very serious saying,
“Mary is a good girl; they don’t pay her enough.” This was the longest conversation that I have ever
had with Leo in over 2 years.
The men know each other’s habits and look out for each other. They tease and sometimes seek
to embarrass each other. They argue, especially about sports and politics. Some men knew each
other on the street, and a few encouraged their buddies to come to St. Joe’s. They have an informal
referral and information network. Its hub is the porch. There are real friendships between some of
the men, notably among the boys on the porch.
When one of the men, a long-term resident of St. Joe’s, died at the hospital, he was brought back
for his wake and funeral liturgy. His friend at St. Joe’s met his body at the door and accompanied
it to the chapel. The men formed a funeral procession behind him. A retired chaplain welcomed
residents, staff, and former staff to the funeral liturgy.
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Chapter 11 The Boys on the Porch: Life Among Previously Homeless Men
The men at St. Joe’s live in the present. Their futures are uncertain. They have aged beyond their
years and many suffer from chronic physical and emotional illnesses. There is little discussion of
the past. When the men talk about their former lives, they seem to be describing a movie or events
that went on around them. It is difficult to accurately assess their social capital.
▸
Human Capital of the Men at St. Joe’s
While the social capital of the men at St. Joe’s could be enhanced, many have human capital. If you
view homeless men as poor, uneducated, shiftless, and dangerous, you are not describing the men
at St. Joe’s. Several residents have graduate degrees; one is currently a doctoral student at a nearby
university. In their former lives, the men were chemists, college teachers, and ship captains. Others were professional photographers and cooks. One is an artist. Many worked in the steel mills
and mines that were such a part of industrial Pittsburgh. Others were plumbers, painters, electricians, and handymen. Some have pensions or trust funds. I know a story about a former resident
at St. Joe’s. His financial adviser told me about a wealthy client whose spending habits changed very
suddenly. When she visited his home, she found many boxes. He could not explain what was in
the boxes or why they had not been opened. She encouraged him to seek help, but his pattern of
spending continued and the number of unopened boxes increased. Eventually, he squandered his
assets and became a resident at St. Joe’s.
Economically speaking, the residents at St. Joe’s are at or below the poverty level. Most of the
men had worked; some had owned property. Some cannot afford the cost of living there. A few residents pay their rent by working at St. Joe’s. One of the men on the porch who works in the kitchen
jokes about all the jobs he lost in his life. His experience is not unique. There are many studies in
the United States and around the world that show an association among mental illness, addiction,
and poverty (Costello, Compton, Keeler, & Angold, 2003). Mental illness, addiction, violence, and/
or post-traumatic stress disorder (PTSD) have altered work histories and personal and family lives
of the men at St. Joe’s.
Part of St. Joe’s mission is to help the men live independently. Men are encouraged to go for
job interviews and place their names on lists for subsidized housing. The men at St. Joe’s are not
homeless, yet many lack the personal or economic resources to live independently in the community. When a resident leaves St. Joe’s, the men on the porch discuss how well he will do. Because it
appears that no one who left has ever come back in recent years, it is hard to know if their predictions
are correct. Some of the men are dependent on St. Joe’s. For example, long before his cancer diagnosis, James had cognitive and physical impairments that required him to be helped by others. The
majority of men at St. Joe’s once had independent lives. Yet they found themselves homeless, living
on the streets, begging for money or food, being insulted by passersby, and bothered by the police.
Life on the streets is hard. It is not surprising that many of the men look older than their stated
age. As noted, some men have significant chronic physical or mental health problems that make
living alone difficult and even dangerous. Although you could argue that previously homeless men
are vulnerable, using Aday’s criteria (2001) it would be hard to say that James and the other men
are bereft of social or human capital.
At times, I have had conversations with the boys on the porch about how they see life and
themselves. James is at home. Although he is single and has no living relatives, he has a home, an
address, and people who look out for him. Former staff members and the nurse who volunteers
visit him. The men help and protect him. At St. Joe’s, James is a person with a name, an identity,
capital, social status, support, and friends.
Human Capital of the Men at St. Joe’s
131
William has been at St. Joe’s for about 8 years. He is one of the old-timers; the staff trusts him
to work at the front desk and have access to some of the keys. One evening at supper time, an ambulance, a fire engine, and two police cars arrived at St. Joe’s. William took the police and paramedics to the elevator and pushed the button for the third floor. There they met the director, more
police, and one of the residents. When they brought the resident on the elevator, one of the policeman said to William, Aren’t you going to get off ?” “No,” said William, “I brought you up here and
I am taking you down.”
I do not know William’s age, but he looks like an old man. He does not shave each day and is
inattentive to his physical appearance. He looks as if he could still be on the street. Recently, he had
a hernia repaired. Some of the men and the staff took care of his responsibilities while he was hospitalized and recovering at St. Joe’s. He told me recently that the staff in the kitchen knows what he
can eat. Although he talks about his mother and his dad with reverence, he conveys a sense that life
was anything but easy after he grew up. He is tired from the struggle. Although he is quiet on the
porch, he is very well connected to the grapevine. If you have a question or need to know something, William is one of the go-to men. Shortly before Thanksgiving, he said that he was very happy
and content at St. Joe’s and was glad that he was here. He said, “I have real friends here.” He began
listing his friends, notably Fred.
Fred is much younger than William. You could meet Fred anywhere and never guess that he
was once homeless. If you walked into St. Joe’s and met Fred, you would think that he was a volunteer or a member of the staff. William brought Fred to St. Joe’s. Fred is always telling everyone that
William is misbehaving and causing trouble. William laughs. The staff and some of the men know
a little of Fred’s previous life. He is an educated man with a graduate degree; he had a good job in a
laboratory. Shortly before the holidays 11 years ago, his wife and two young children were driving
to visit relatives. Fred planned to fly to join them at the end of the workweek. His wife and children
were killed in a car accident. Fred talks about his mother, his father, and his very ill cousin who is
in a local nursing home. He visits his cousin frequently and advocates for him. Fred, and the other
men at St. Joe’s, never talk about Fred’s wife and children. Fred is helpful in the house. He is neatly
groomed and likes things to be orderly. He also sits at the front desk during the day—answers the
phone and sorts the mail. His main support and confidant is William; he often tells stories of when
he and William were on the streets of Pittsburgh.
The authors who write about vulnerability say that vulnerable people lack autonomy. St. Joe’s
is a total institution. It is difficult to be autonomous in any institution. Meals are at certain times;
there are house rules, notably those that pertain to smoking, social behavior, and alcohol and drug
use. The men share bathrooms, shower rooms, lounges, and kitchens. There are monthly fire drills
and routine room checks. Meals are served at set times; however, the men can take their meals
or extra portions of food to their rooms or keep them in refrigerators and reheat them in the microwaves in the kitchenettes. Although there are suggestion boxes and monthly house meetings,
the men do not plan the menus, shop for food, set meal times, or arrange for programs. The men
have privacy and some control over their lives and schedules. They are not required to attend activities or meetings. They are reminded and coaxed to go to events; prizes and treats are published with the event announcements. Although they are required to sign in and out, they come
and go as they please.
Most of the men are loners, even the boys on the porch who are the most visible and verbal of
the men. Rarely do they gather in the lounges. They watch TV or play video games in their rooms.
They rise early. Their voices can be heard on the porch at 5 a.m. Newer residents often comment
that it is safe and quiet at St. Joe’s. Some tell stories about the noise and danger in other shelters. Yet,
even at St. Joe’s the men are wary and do not trust everyone.
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Chapter 11 The Boys on the Porch: Life Among Previously Homeless Men
What can be learned about homelessness from the literature and from knowing the boys on
the porch? Although the men at St. Joe’s have a place to live, their time on the streets remains part
of their lived reality. They are watchful, assessing and judging new staff and residents. They scan
the neighborhood. Trust is not bestowed, it is earned. The public health continuum—early identification of those at risk, prevention, treatment, health maintenance, and aftercare—is not a linear
journey for vulnerable people, especially those who suffer from substance abuse, mental illness,
and homelessness. While the men at St. Joe’s are not forced to leave their resting places each morning and go back to the streets, affordable and accessible housing is only part of the solution for
homeless men, women, and families. The capacity to live independently after months or years on
the streets requires interventions sustained over a long period of time. Previously homeless men
need help reentering life.
▸
Prevention and Early Treatment of Homelessness
What would be different if some of the underlying causes of homelessness could be recognized,
prevented, and/or treated: poverty, addiction, mental illness, PTSD, and domestic violence? Contemporary research findings suggest that homelessness is explained by a convergence of factors,
changing housing markets, and reconstructed labor markets as well as personal disabilities (Shay &
Rossi, 1992). Some previously homeless people have criminal histories; others have been unemployed for many years. There is no easy fix to the homelessness problem. It is a social as much as
a personal problem.
Yet prevention of homelessness and its precursors offers the most hope. It is important to
remember that the underlying causes of homelessness can be prevented or addressed before they
radically affect a person’s life and destroy families and communities. Heightened interest in the
determinants of health (CDC, 2017) offers a glimmer of hope. Across the healthcare spectrum major
health systems and large insurers publicly acknowledge that health is more than the absence of disease.
Providers and insurers acknowledge that it is difficult to manage diabetes or any chronic physical
or mental disease when a person has unstable living arrangements, food uncertainty, addiction,
or mental illness. Raising awareness and addressing the many factors that determine health is a
major challenge for communities, educators, health professionals, health providers, and all levels
of governments. Poverty, mental illness, and violence, the major causes of homelessness, do not
respect age, gender, or social status. Although no single factor determines who will become addicted,
mentally ill, or homeless, home, family, peers, and schools are identified by the National Institute
of Drug Abuse (NIDA; 2014) as environmental factors that can increase or minimize risk. Early
intervention and treatment for persons with mental illness, addiction, or exposure to violence are
also significant factors in reducing or even preventing homelessness. Assistance with rent, delay
or prevention of foreclosure on homes, job counseling, and support for persons who flee violence
and unsafe situations can reduce the number of people on the streets. Many homeless people have
chronic health conditions. These persons frequent safety-net clinics and emergency rooms. They
are usually very sick because the factors that determine health and access to treatment elude them.
The Affordable Care Act (2010) encouraged prevention, primary care, medical homes, and
community-based collaboration as well as access to affordable health insurance to improve access
to care. Garret and Gangopadhyaya (2016) note that from 2010 to 2015, approximately 20 million
more Americans obtained health insurance. VanVleet and Paradise (2015) predicted that the demand for primary care will increase over the next 5 years because of aging populations and an increased number of people with health insurance. Yet, access to care remains a problem because
References
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primary care Health Professional Shortage Areas exist in half the states. Illnesses and maladies that
bring people to primary care have changed. Patients are older, have several chronic diseases, and are
treated with many medications. Alexander and Wilson (2015) reported that half the treatment for
psychiatric disorders occurs in primary care settings rather than in mental health clinics or psychiatrists’ offices. Given the demand for primary care, mental health problems can go undetected and
untreated in these busy settings because of time limitations and a shortage of prepared staff. Sadly,
addiction is often recognized after a person overdoses or is arrested. While the Substance Abuse
and Mental Health Services Administration’s (SAMSA; 2016) website lays out data, statistics, and
evidence-based treatment protocols for those who use or abuse substances, mental health care or
extended treatment for addiction is not accessible to people who need it.
Given these data, it is not surprising that vulnerable people, especially homeless people, have
difficulty in accessing primary care and in following a plan of management. They are easily lost
in large systems and reappear when their medical and/or psychiatric symptoms overwhelm them.
▸
Conclusion
The boys on the porch and the men at St. Joe’s are survivors of homelessness. Their illnesses were
not prevented or adequately treated. Analyzing the intersectionality of health disparities, poverty,
exposure to violence, mental illness, and addiction would add to the body of knowledge about vulnerable populations, especially the homeless.
At the policy level, homelessness is a taboo topic. Like addiction, it is seen as a moral failure rather than a tragic outcome of brain disease and mental illness. Despite repeated efforts to
gain insurance and healthcare parity for persons with mental illness or addictions, few resources
are available to this population. Persons with acute manifestations of mental illness or addiction
are stabilized on medication or undergo detoxification. After these acute interventions, persons
with mental illnesses or addictions do not receive warm hand-offs, follow-up care, and longterm support. Their healthcare options are very different from people with other chronic illnesses such as diabetes or hypertension. The failure to prevent or adequately treat mental illness
and addiction explains why American jails and prisons are the new asylums (Lithwick, 2016).
Before or after incarceration, persons with mental illness and/or addictions become homeless
and live on the streets.
References
Aday, L. A. (2001). At Risk in America: The health and health care needs of vulnerable populations in the United States.
San Francisco, CA: Jossey-Bass.
Alexander, L., & Wilson, K. (2015). Understanding primary and behavioral healthcare integration. Mental Health America &
National Council for Community Behavioral Healthcare. Retrieved from https://www.thenationalcouncil.org/webinars
/understanding-primary-and-behavioral-healthcare-integration/
Bourdieu, P. (1986). The forms of capital. In J. Richardson (Ed.), Handbook of theory and research for the sociology of education
(pp. 15–29). Westport, CT: Greenwood.
Catholic Charities of Pittsburgh. (2016). St. Joseph’s House of Hospitality. Retrieved from https://www.ccpgh.org/file
/documents/2016/fliers/2016_StJoeBrochure.pdf
Catholic Charities USA. (2104). 2013 annual housing survey. Retrieved from https://files.catholiccharitiesusa.org/files
/publications/2013-Annual-Survey-Fact-Sheet-Housing.pdf?mtime=20150819174631&_ga=2.227180957.1845546787
.1511641718-125081170.1511641718
Centers for Disease Control. (2017). Social determinants of health. Retrieved from https://www.cdc.gov/socialdeterminants/
Center for Health Care Strategies. (2014). Reaching vulnerable populations through health reform. Retrieved from https://
www.chcs.org/resource/reaching-vulnerable-populations-through-health-reform/
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Costello, E. J., Compton, S. N., Keeler, G., & Angold, A. (2003). Relationships between poverty and psychopathology. JAMA,
290(15), 2023–2029.
DANIDA (2000). Workshop papers: Improving the urban environment and reducing poverty. Retrieved from http://web
.mit.edu/urbanupgrading/urbanenvironment/issues/vulnerable-groups.html
Flaskerud, J. H., Lesser, J., Dixon, E., Anderson, N., Conde, F., Kim, S., . . . Verzemnieks, I. (2002). Health disparities among
vulnerable populations: Evolution of knowledge over five decades in nursing research publications. Nursing Research,
51(2), 74–85.
Flaskerud, J. H., & Winslow, B. J. (1998). Conceptualizing vulnerable populations: Health-related research. Nursing
Research, 47(2), 69–78.
Garret, B., & Gangopadhyaya, A. (2016). Who gained health insurance coverage under the ACA, and where do they live?
Washington, DC: The Urban Institute.
Grabovschi, C., Loignon, C., & Fortin, M. (2013). Mapping the concept of vulnerability related to health disparities: A scoping
view. BMC Health Services Research, 13, 94.
Lithwick, D. (2016, 5 January). Prisons have become America’s new asylums. New York Times.
National Coalition for Homeless Veterans. (2009). Facts about homeless veterans. Retrieved from http://nchv.org/index.php
/news/media/background_and_statistics/
National Coalition for Homeless Veterans. (2009). Homeless veterans. Retrieved from http://www.nationalhomeless.org
/factsheets/Veterans.html
National Institute of Drug Abuse. (2014). Drug abuse and addiction. Retrieved from https://www.drugabuse.gov/publications
/drugs-brains-behavior-science-addiction/drug-abuse-addiction
National Law Center on Homelessness & Poverty. (2014). No safe place: The criminalization of homelessness in American
cities. Retrieved from: https://www.nlchp.org/documents/No_Safe_Place
Paul Bassompierre obituary. (1985). Pittsburgh Post-Gazette.
Shay, A. B., & Rossi, P. H. (1992). Contemporary studies of homelessness. Annual Review of Sociology, 18, 129–160.
Sherman, N. (2015). Healing the moral wounds of our soldiers. New York, NY: Oxford University Press.
Shi, L., & Stevens, G. (2015). Vulnerable populations in the United States. San Francisco, CA: Jossey-Bass.
Sisters of Charity of Seton Hill (n.d). Roselia Foundling and Maternity Asylum. Retrieved from http://www.scsh.org
/who-we-are/roselia-foundling-and-maternity-asylum/
Substance Abuse and Mental Health Services Administration. (2016). Treatment for substance disorders. Retrieved from
https://www.integration.samhsa.gov/about-us/
Tick, E. (2013). PTSD: The sacred wound. Health Progress. Retrieved from https://www.chausa.org/publications/health-progress
/article/may-june-2013/ptsd-the-sacred-wound
VanVleet, A., & Paradise, J. (2015). Tapping nurse practitioners to meet rising demand for primary care. Medicaid Issue Brief.
Retrieved from https://www.kff.org/medicaid/issue-brief/tapping-nurse-practitioners-to-meet-rising-demand-for-primary-care
CHAPTER 12
Validation of Fluid Intake
Tracking System Designed
for Heart Failure Patients
Kelly Dunn
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss the impact of heart failure on the healthcare system.
2. List three characteristics of heart failure patients that lend to their vulnerability.
3. Describe components of effective patient education regarding heart failure self-care
management.
▸
Introduction
Heart failure (HF) is a chronic, progressive, and often fatal condition affecting people worldwide
in epidemic proportions. A report by Roger (2013) states that more than 5.8 million people in the
United States and 26 million worldwide are living with HF; 50 percent of patients die within 5 years
of their HF diagnosis. According to the American Heart Association’s (AHA) Heart Disease and
Stroke Statistics Update (2017a), the number of people diagnosed with HF is increasing and projected
to rise by 46 percent by 2030. The financial burden of HF is profound and contributes significantly
to national healthcare expenditures. A policy statement from the AHA regarding the impact of HF
in the United States reported that total medical costs in 2012 were $20.9 billion and are projected
to increase to $53.1 billion by 2030 (2013).
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
BOX 121 New York Heart Association Heart Failure Classifications
Class I No limitations to ordinary physical activity.
Class II Slight limitations to ordinary physical activity with undue breathlessness, fatigue, or
palpitations.
Class III Marked limitations to less than ordinary physical activity with undue breathlessness, fatigue,
or palpitations.
Class IV Symptoms may be present at rest and discomfort made worse with any physical activity.
Modified from the Criteria Committee of the New York Heart Association. (1994). Nomenclature and criteria for diagnosis of diseases of the heart and
great vessels (9th ed.). Boston, MA: Little, Brown & Co.
HF is not a diagnosis made in isolation, but rather a complex syndrome characterized by
reduced heart efficiency with accompanying hemodynamic and neurohormonal responses. The
heart can be impaired in its ability to contract, relax, or both. Causes of HF are numerous, and most
are irreversible. No matter the mechanism of insult, the result is the inability of the heart to adequately meet the blood flow needs of the body. Symptoms include progressive fatigue, dyspnea on
exertion, shortness of breath, orthopnea, palpitations, edema, poor digestion, vascular fluid volume
overload, renal impairment, and eventually decreased cognitive function. The Criteria Committee
of the New York Heart Association (1994) developed a staging system for HF that has become an
international standard based on the patient’s activity tolerance (see BOX 121). As the disease progresses, patients will have episodes of decompensation and fluid volume overload requiring hospitalization. Rehospitalization rates, though declining nationally, remain high with approximately
20 percent of Medicare beneficiaries readmitted within 30 days of discharge (Bradley et al., 2013).
The goal of treatment is to slow disease progression, avoid decompensation, manage symptoms,
and reduce hospitalizations.
▸
Heart Failure Patients as a Vulnerable Population
Age, Race, and Socioeconomic Factors
HF affects all vulnerable patient populations including the elderly, racial minorities, the socioeconomically disadvantaged, the uninsured, and those with coexisting chronic medical conditions. HF disproportionately affects the elderly population. Incidence and prevalence are
influenced by the aging of the population as more than 80 percent of those diagnosed with HF
are older than 65 years of age (Roger, 2013). Incidence further increases as people age, with
approximately 20 per 1,000 individuals 65 to 69 years of age to 80 per 1,000 individuals among
those equal to or older than 85 years of age living with the condition (Curtis et al., 2008). More
elderly Americans are hospitalized with HF than any other condition, and more Medicare dollars are spent on diagnosis and treatment of HF than any other condition (Greiner et al., 2012).
Additionally, the elderly are more likely to suffer from concurrent chronic medical conditions,
making living with HF all the more difficult as these patients have multiple medications and dietary plans to manage.
Blacks are an especially vulnerable population as they have the highest incidence of HF and
poorer outcomes. An investigation by Bahrami et al. (2008) revealed that the higher incidence is
attributed to prevalence of high blood pressure, diabetes, the quality and availability of medical
HF Self-Care Education Trends and Challenges
137
care, and disparities in socioeconomic factors. Patients of all backgrounds with limited financial
resources and the uninsured are at risk of increased morbidity and mortality owing to a lack of
access to medical care, difficulty affording medications, and an inability to follow up after hospital discharge with HF specialists. This is supported by the fact that hospitals in resource-poor
communities have higher 30-day readmission rates (Ziaeian & Fonarow, 2015).
A study by Desai (2015) points out that HF patients are especially vulnerable after being discharged from the hospital, with approximately 30 percent of all readmissions occurring within the
first 2 months following the discharge for HF exacerbation. This time of transition from hospital
back to the community often involves managing new medications, frequent office visits, and lifestyle
changes to maintain the stability achieved while admitted. The AHA released a statement regarding
the transition of care for HF patients, noting that although post-discharge healthcare services are
increasing, they are not slowing the rate of rehospitalization (2015). Patients who leave the hospital with an unclear understanding of what is expected of them or without proper support systems
in place tend to have poorer outcomes.
The Burden of Self-Care
Living with HF and maintaining optimal quality of life relies heavily on the patient’s ability to
perform self-care management and activities. Self-care of HF requires that patients have knowledge of their disease process and management, self-management skills to apply this knowledge
to their daily life, and confidence that they can sustain self-management behaviors to maintain
and improve their health status (AHA, 2017b). Self-care behaviors and skills for the HF patient
include taking medications, keeping appointments, lifestyle changes, and performing daily
self-monitoring tasks. Daily tasks include obtaining daily weight and blood pressure values along
with calculating and limiting daily sodium and fluid intake. Self-care management also involves
recognizing changes in signs and symptoms, and responding to these changes by taking an
extra diuretic, limiting fluids, or calling a healthcare provider. This is a significant undertaking for HF patients, considering that patients vary in levels of baseline health, reading and math
ability, healthcare literacy, personal and social support, level of self-efficacy, and degree of personal motivation.
Mastering self-care activities is essential to successful treatment and an improved quality of
life. A study by Lee, Moser, Lennie, and Riegel (2011) showed that patients engaged in self-care activities had a 56 percent reduction in the risk of all-cause mortality, hospitalization, and emergency
room admissions compared to those who were less engaged. Furthermore, the study concluded
that patients with HF who were more engaged in self-care management had an event risk nearly
equivalent to those who were symptom-free. Conversely, an inability to master these tasks and participate in their own care is associated with 15–42 percent of cases of HF decompensation and exacerbation, and is a leading preventable cause of rehospitalizations and premature death (Maeda,
Shen, Schwarz, Farrell, & Mallon, 2013).
▸
HF Self-Care Education Trends and Challenges
Educating patients and their families on living with and managing HF is essential. In the past several years there has been a national focus on increased education for HF patients. This uptrend is
in response to the Affordable Care Act’s implementation of the Hospital Readmissions Reduction
Program, which requires Centers for Medicare and Medicaid Services (CMS) to reduce payments
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
to hospitals with high readmission rates for HF and certain other diagnosis (CMS, 2012). Typically, this education occurs at hospital discharge when time is limited and staff are unable to adequately assess the patient’s comprehension of the material, or individualize the lesson based on
the patient’s abilities. Time is not allotted for the patients to demonstrate their newly discussed
skills, yet healthcare professionals often believe that they have provided adequate information
and education (Rothberg et al., 2010). This being said, it is not surprising that, despite the recent
increased focus on education, a gap remains between the information provided and the patient’s
ability to develop and apply the necessary skill sets required for adequate self-care management.
The need for improved patient education, self-care skills teaching, and continued monitoring of
self-care behaviors is cited in HF guidelines, scientific statements, and research evaluating readmission rates. The AHA released a scientific statement regarding what is referred to as therapeutic patient education (TPE). The statement asserts that patient education for cardiovascular care
should promote patient and family learning about the treatment of disease and the adoption of
self-management behaviors to improve physical and psychosocial outcomes. It is their assertion
that TPE can overcome limitations of traditional patient education to support cardiovascular disease self-management (AHA, 2017b).
Literature corroborates that knowledge-based education is not adequate for teaching self-care
behaviors to HF patients. The Heart Failure Society of America (HFSA) asserts that teaching is not
sufficient without skill building for critical target behaviors and recommends that patient education
includes associated skills (HFSA, 2010). Healthcare organizations and institutions have developed
various approaches to educate patients with HF on the importance of adhering to dietary restrictions. Despite all efforts, poor self-care and noncompliance remain an issue, and there remains a
lack of consistency in the educational methods and instruments employed.
Restricting daily fluid intake is an essential HF self-care management behavior. Typically, HF
patients are prescribed 1,500–2,000 ml/day, which includes food items that contain fluid, as well
as beverages. The importance of adhering to fluid-restriction parameters is emphasized repeatedly
in literature, on patient information websites, and in discharge instructions given to hospitalized
patients. Studies have shown that the most effective approach to teaching HF self-care should be
straightforward, standardized, and practical for a variety of patients, professionals, and organizations (Jurgens, Lee, Reitano, & Riegel, 2013). Despite this knowledge, there remains a wide variety
of instructions and recommendations to minimize daily fluid intake, and no validated instrument
exists for patients to track their fluid intake. In a study evaluating the effectiveness of HF discharge
education, patients reported that tactical skills based on planning are the most lacking element of
HF patient education. Despite being told that they should adhere to dietary restrictions, patients
did not feel they had the tactical skills to do so and felt ill-prepared to apply these concepts once
discharged from the hospital (Davis et al., 2012). To address this problem, a fluid intake tracking
system (FITS), an instrument that healthcare providers and patients can use to teach and monitor
daily fluid intake, has been developed.
▸
The Study
Prior to conducting research with the HF population, the FITS instrument required validation. The
purpose of this study was to investigate the usability, validity, and reliability of the FITS in the general population. This study focused on the use of the fluid intake tracking sheet; however, the system also includes educational material and suggestions for minimizing fluid intake. The research
question was: Is the fluid intake tracking sheet, the main component of a FITS, easy to use by adults
keeping track of their daily fluid intake?
Instrument Design and Development
▸
139
Literature Review
A comprehensive literature review was conducted by utilizing Internet searches during a 15-month
period from 2015 to 2016. The electronic databases ProQuest, PubMed/MEDLINE, Cumulative Index
for Nursing and Allied Health Literature (CINAHL), MedlinePlus, ScienceDirect, SAGE, LexisNexis
Academic, GALILEO, and Elton Bryson Stephens Company (EBSCO) were searched. Queries
included combinations of terms including heart failure, acute heart failure, heart failure readmission,
self-efficacy, healthcare literacy, fluid overload, fluid restriction, fluid restriction education, and fluid
restriction adherence. Review of currently available fluid-restricted diet education found a variety
of methods and systems to limit and track daily fluid intake. The AHA and HFSA websites contain
links (labeled For Professionals) to HF teaching guides authored by various U.S. hospitals. These
resources contained conversion tables for fluid measurements and general instructions for keeping track of fluid intake; however, there was no consistency in the presentation of this information.
The AHA, HFSA, and the National Heart, Lung, and Blood Institute websites mention the importance of restricting fluid intake, but none of them provide a method for doing so. No evidence was
found in the literature indicating that any method is valid, reliable, or more effective than others.
Additionally, these instructions were only included in hospital discharge patient education packets.
No educational methods were found designed to be taught at the bedside or in outpatient settings.
No studies were found using an instrument like FITS. A U.S. Patent Office online search found no
methods or products for limiting fluid intake.
▸
Instrument Design and Development
Conceptualization
The instrument was developed by a former nurse (now nurse practitioner) while working in the
coronary care unit (CCU) of a large hospital with an established advanced HF program. Patients
admitted to the CCU with symptomatic HF were regularly put on a 1,500 ml/day fluid restriction.
This restriction was met with varying degrees of compliance and resistance on the part of the patients. Physicians had the expectation that nurses would keep the patients within their fluid restriction, not realizing that the nursing staff had not received specific training on how to do so. Methods
employed to educate on or assist patients with keeping track of their fluid varied among nurses, and
many made no special effort in this area. Nurses who did take the initiative were left to their own devices, employing graduated cylinders, writing volumes in milliliters on dry erase boards throughout
their shift, and encouraging patients to keep a pen and paper tally. Admirable as these efforts were,
there was no system in place for the nurses on the next shift to continue the education if they so desired. Based on this experience, the FITS instrument was developed using the following assumptions:
1.
2.
3.
4.
5.
6.
Daily fluid intake for hospitalized HF patients is seldom accurately recorded.
Fluid restriction teaching and monitoring should be consistent along the continuum of
care from hospital to home.
Patients who do not fully understand how to measure and track their fluid intake are
likely to be noncompliant.
The conversion of ounces of fluid into the milliliters or liters prescribed to the patient
is difficult for patients.
Current methods for teaching HF patients to keep track of their fluid intake are not
easily applied in daily life.
A pen and paper method would be convenient, portable, and cost-effective.
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
Theoretical Perspective
FITS was developed to be congruent with Bandura’s health promotion by social cognitive means
theory, the aim of which is to promote effective self-management of health habits throughout the
life span (Bandura, 2004). This theory is unique in that its focus is on how to help patients change
behavior, rather than the more commonly found theoretical framework of predicting health habits.
The health promotion theory asserts that self-efficacy should be assessed as a patient’s confidence
in tackling specific challenges rather than a global judgment of ability. Utilization of FITS, which
simplifies the task of monitoring fluid intake, provides opportunities to foster patients’ confidence
in their ability to adhere to daily fluid restrictions. By providing opportunities for mastery experiences related to fluid intake, confidence level in the patient’s ability to perform other self-monitoring
and self-care behaviors have potential to increase. Bandura suggests that interactive guidance on
the part of the healthcare professional should be tailored to people’s self-management capabilities and motivational preparedness to achieve desired changes. FITS can be applied to the levels of
self-management capability and motivational preparedness outlined by Bandura (see TABLE 121).
TABLE 121 Application of FITS to Bandura’s Model
Level of Self-Management Capability and
Motivational Preparedness
Individuals at the first level:
■
■
Possess a high sense of efficacy and positive
outcome expectations for behavior change.
Succeed with minimal guidance to accomplish
the changes they seek.
Individuals at the second level:
■
■
■
■
Have self-doubts about their efficacy and the
likely benefits of their efforts.
Make half-hearted efforts to change and are
quick to give up when they run into difficulties.
Need additional support and guidance by interactive
means to see them through tough times.
Can be provided this guidance through tailored
print or telephone consultation.
Individuals at the third level:
■
■
■
Believe that their health habits are beyond their
personal control.
Need a great deal of personal guidance in a
structured mastery program.
Can benefit from progressive successes, which
build belief in their ability to exercise control
and bolster their staying power in the face of
difficulties and setbacks.
Application of FITS Instrument
FITS education can be performed in 15 minutes
or less and is immediately usable by the patient.
First-level patients will catch on quickly and
need little or no additional education.
These patients may use the instrument in
the short term to master the concept and then
manage their fluid restrictions independently.
Practicing the use of the FITS with the patient
offers opportunity for immediate feedback, reeducation, and encouragement.
The tracking sheet provides a visual guide
of remaining allowance for the day. Patients
can be taught to plan for success, rather than
experiencing a feeling of failure when intake is
added up at a later point in the day and found
to be excessive.
The tracking sheet can be brought to office
visits for review, creating opportunities for
praise and reinforcement of self-care behaviors.
Practicing with the patient and reviewing
tracking sheets together forms a patientprovider partnership in achieving compliance.
Identification of difficulties when reviewing
sheets fosters a supportive rather than punitive
approach on the part of the provider.
Modified from Bandura, A. (2004). Health promotion by social cognitive means. Health Education and Behavior, 31(2), 143–164.
Instrument Design and Development
141
Instrument Design
The main component of FITS is the fluid intake tracking sheet—a pen and paper instrument
designed to teach patients with HF how to accurately monitor and record their daily fluid intake.
The sheet also provides a place for patients to record their daily weight and blood pressure, which
are additional fundamental HF self-care tasks (FIGURE 121). The FITS was designed to be simple to
learn and easy to use by persons with a wide variety of educational backgrounds and cognitive abilities. The system uses common language and few medical terms, as suggested by the HFSA (2010)
for improving HF self-care participation.
The sheet contains a pictograph of a glass with a measure of ounces marked vertically along the
left side and milliliters marked in a similar fashion along the right. The dual measurement markings are intended to eliminate the need for calculations between ounces and milliliters. Patients are
to draw a line horizontally across the glass for each amount of fluid they consume throughout the
day. The pictograph was incorporated to allow the instrument to be usable by patients with various
levels of heath literacy. Pictographs also are useful to bridge language barriers and have been shown
to be effective with elderly patients (Choi, 2011). The simple format allows users to incorporate
their individual style when recording fluid intake. While one user may prefer straight lines made
with a ruler, the more artistic user has the option to use pens and markers of their choosing. Family
involvement in HF self-care activities leads to higher rates of compliance (Srisuk, Cameron, Ski, &
Thompson, 2015). The simple design of the fluid intake tracking sheet provides an opportunity
for family members to assist in recording fluid intake (FIGURE 122). Additionally, the design of the
sheet lends itself well to the teach-back method of patient education. This method has been proved
to increase satisfaction among HF patents in the area of self-care instruction and reduce hospital
15 0 0
50
48
14 0 0
1300
44
40
120 0
36
1 10 0
10 0 0
90 0
32
28
80 0
24
70 0
600
50 0
20
16
40 0
12
30 0
20 0
10 0
8
4
Oz
Date
FIGURE 121 Fluid intake tracking sheet
mL
Weight
Blood
pressure
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
15 0 0
50
48
14 0 0
1300
120 0
44
40
36
32
28
24
20
16
12
8
4
Oz
1 10 0
10 0 0
90 0
80 0
70 0
600
50 0
40 0
30 0
20 0
10 0
mL
FIGURE 122 Example of a fluid intake tracking sheet
readmissions (White, Garbez, Carroll, Brinker, & Howie-Esquivel, 2013). The teach-back method
has also proved to be useful in overcoming learning challenges associated with health literacy and
age in the geriatric population (Cutilli & Schaefer, 2011).
Hospitals with poor resources have higher 30-day readmission rates for HF patients. This
is especially true for publicly owned hospitals and those in areas with lower median incomes.
The same holds true for hospitals without cardiac resources (Joynt & Jha, 2011). The pen and
paper design of the fluid intake tracking sheet is cost effective and easily made available to all
healthcare facilities. Measuring cups, pitchers, or electronic devices are not included in the FITS
instrument. No special inks, papers, or bindings are necessary for reproduction of the instrument. Copies can be made on-site using a standard photocopier or ordered in bulk through
printing services. The sheets can be utilized throughout the hospital stay and provided to patients at discharge. The same ease of reproducibility holds true for physician offices, clinics,
and home health agencies.
Design Validity
Face validity was established by the response of the patient who was first introduced to the concept of drawing a glass to track fluid intake (see Case Study 1). Face validity was reinforced several
months later when the designer set down the FITS paperwork to be presented to a panel of experts
on a desk in the CCU and needed to step away. Ten minutes later, the designer returned to find
two of the nurses stapling together copies of the FITS paperwork. When asked about their activity, one of them replied, “I was nosy and looked through it and thought ‘I need to have this for my
patients.’ I showed it to the charge nurse and she told me to make 25 copies.’ I am sorry for taking
it, but I just got so excited when I saw it.”
To further establish face validity and assess content validity, FITS and a list of its design constructs were presented to a panel of three experts (see BOX 122). The panel consisted of a clinical
Methods
143
BOX 122 FITS Design Constructs
The instrument should:
■
■
■
■
■
Provide a method for tracking fluid intake that is easily understandable no matter the education,
aptitude for math, or literacy level of the patient.
Provide education that can be immediately accessed by the instructor.
Provide education that can be presented in 15 minutes or less.
Provide education that includes a mechanism for return demonstration by the patient and his or
her family members.
Provide information regarding fluid intake that can be introduced in any patient care setting.
K.Dunn 2017
cardiologist, an advanced practice nurse with more than 20 years of cardiac experience, and a
nursing professor with a cardiac critical care background. After reviewing the instrument, the experts unanimously found that the elements of the construct were represented in the design and
they believed it would be easy for people to use.
▸
Methods
Approval and Participants
Institutional review board (IRB) approval was granted by the university. As HF is more common in
older adults and the elderly, it was determined that participants needed to be older than 55 years of
age. As dictated by the structure of the master’s level nursing research course for which the study
was conducted, a sample of convenience was recruited from community settings (senior citizens’
centers, church groups, and social clubs for seniors). The investigators also had access to retirement
communities whose directors gave verbal permission to collect data from their residents, spreading the sample among three agencies in the southern and northeast United States. IRB approval
was not required by any of the participant recruitment sites.
Study Design and Procedures
A quantitative user experience study was conducted to gather data about the usability of the instrument in daily life. To ensure consistency, instructions and expectations discussed by the researchers were scripted and each data collector read the same script. Prospective participants were
given an overview of the study and shown the contents of the folder they would receive (instruction sheets, intake tracking sheets, fluid intake education material, a survey, and a self-addressed
stamped envelope). Those who wished to participate were consented, read the instructions for the
use of the instrument, and shown a brief demonstration. This process took approximately 10–15
minutes. Participants were then asked to give a return demonstration to indicate understanding, and
were given the opportunity to ask questions. Participants were instructed to use the instrument for
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
2 full days and were encouraged to take the intake tracking sheet with them when out to restaurants, running errands, and visiting with friends and family.
Participants were instructed to complete and mail the user survey at the end of the instrument usage period. The survey comprised a six-item questionnaire regarding the learnability, ease
of use, and portability of the instrument utilizing Likert-like responses ranging from agree to disagree. The survey also contained three open-ended questions and a space to include suggestions
for improvement. To protect participant confidentiality and maintain the integrity of the scripted
instructions, no personal information was exchanged between participant and researcher and no
follow up was conducted.
Data Collection and Analysis
Surveys were received during a 4-month period in 2015, with a second identical administration
conducted in January 2016 to expand the sample size. A total of 88 participants were consented, and
54 completed surveys were returned for a response rate of 61.4 percent. The response rate was determined adequate for a preliminary study to assess usability in the general population since more
than the minimum 60 percent response rate for survey research was obtained (Fincham, 2008).
Based on a two-tailed t-test at the .05 level of significance, the sample size generated a power of .95.
▸
Results
The six-item questionnaire responses were entered in an Excel spreadsheet for response occurrence and percentage analysis (TABLE 122). IBM SPSS statistics software version 22 was utilized to
perform statistical analysis on the questionnaire responses. Internal consistency using the Cronbach standardized item α was 0.96 for the six items, indicating that the instrument is highly reliable and provides a true representation of the non-hospital-based constructs under study. Results
of a two-tailed Pearson product moment correlation (r = 0.01) indicate the instrument is valid in
its ability to record intake with ease.
▸
Discussion
This preliminary study finds the FITS instrument to be an easy way for adults to self-monitor daily
fluid intake. Based on the satisfactory results of the fluid intake tracking sheet testing for internal
consistency, construct validity, and ease of use, recommendations for use of the instrument with
the HF population can be made. This instrument may fill the gap in skills teaching regarding daily
fluid intake measurement in a variety of settings, thereby increasing patient compliance.
The FITS instrument has the potential to help patients translate HF knowledge into self-care
behaviors. Rather than waiting until discharge education is performed, the fluid intake tracking sheet can be used from the time of admission. This will provide opportunities for patients to
actively participate in their care by making choices about which liquids to drink from their meal
trays and learning how to ration ice and water throughout the day. Additionally, nursing staff
and medical providers will have the opportunity to assess the patient’s understanding of the fluid
restriction and his or her skill level regarding fluid intake prior to discharge. These practiced skills
can then be carried over to the patient’s home life after discharge, rather than waiting until the patient gets home to begin to figure out how to limit and track the fluids.
It was easy for me to use this system
to keep track of how much fluid I
took in per day.
When using this system, I was easily
able to understand how the number
of ounces of fluid that I took in were
measured in milliliters.
At any point in the day, it was easy
for me to understand how many
milliliters of fluid I had taken in so far.
At any point in the day, I was able
to understand how many more
milliliters of fluid I could drink before I
reached the top of the cup.
It was just as easy for me to use this
system to keep track of my fluid
intake when I was away from home
as it was when I was in my home.
2.
3.
4.
5.
6.
K.Dunn 2017
I found the instructions on how to
use this system easy to understand.
1.
Question
37 (68.5%)
38 (70.4%)
39 (72.2%)
38 (70.4%)
45 (83.3%)
49 (90.7%)
Agree
n (%)
11 (20.4%)
11 (20.4%)
8 (14.8%)
10 (18.5%)
8 (14.8%)
3 (5.6%)
Somewhat
Agree
n (%)
TABLE 122 FITS Pilot Study Six-Item Questionnaire Responses
2 (3.7%)
2 (3.7%)
3 (5.6%)
4 (7.4%)
1 (1.9%)
0 (0%)
Neutral
n (%)
2 (3.7%)
0 (0%)
2 (3.7%)
0 (0%)
0 (0%)
2 (3.7%)
Somewhat
Disagree
n (%)
1 (1.9%)
3 (5.5%)
2 (3.7%)
2 (3.7%)
0 (0%)
0 (0%)
Disagree
n (%)
1 (1.9%)
0 (0%)
0 (0%)
0 (0%)
0 (0%)
0 (0%)
Did not
answer
question
n (%)
Discussion
145
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
A study by Ciere, Cartwright, and Newman (2012) showed that maintaining physical independence, spending time with loved ones, and having control over one’s life were found to be among the top
five quality-of-life goals for HF patients. More than half (67.44 percent) of study respondents agreed
that it was just as easy to use the instrument to track their fluid intake when away from home. This
result suggests that the instrument has the capacity to help HF patients enjoy more personal freedom
than other available methods (i.e., using a pitcher or large bottle to help them track their intake).
Limitations of the Study
Using a sample of convenience and obtaining no personal information from the respondents were
among the limitations of this study. As health histories were not gathered, it is not known if any
respondents had HF, and sample diversity could not be assessed. The purpose of the study, to determine
the instrument’s ease of use, did not factor in measures to assess reading ability or educational level
of the participants; therefore, the ease of use across differing levels of literacy could not be determined. Replication of the study with a sample of adults with HF would be necessary to validate the
instrument with its target population.
Areas for Improvement
Study findings support the assumption that difficulty converting ounces of fluid intake to
milliliters is a deterrent to tracking fluid intake. Despite the researchers having explained that lines
indicating ounces will not match up exactly to lines indicating milliliters, responses to the areas
for improvement section of the survey such as, “explain milliliters and ounces better,” “not easy to
draw a straight line across,” and “add a conversion tool along the side for reference” indicate that
teaching this aspect of the tool needs be improved. Similarly, the statement with the largest portion
(18.28 percent) of disagree responses was, “At any point in the day, it was easy for me to understand
how many milliliters of fluid I had taken in so far.” These results indicate that although the intake
tracking sheet was designed to eliminate the need for conversion from ounces to milliliters, the
educational package and instructions needed to be reassessed for methods to improve the patient’s
understanding of the correlation between the two measures and their daily intake goals.
The survey contained the question: What difficulties, if any, did you experience using this fluid
intake tracking system in your home? Of those who answered the question, the majority answered
“none.” Two respondents noted difficulty measuring fluid before they drank it. Additional comments were related to drawing on the instrument. “Lines were not easy to demark” and “not easy to
draw a straight line” were noted as difficulties. The second question was: What difficulties, if any,
did you experience using the fluid intake tracking system away from home? The two themes identified from open-ended questions suggested that (1) the instrument was cumbersome and (2) it was
difficult to know how much fluid was consumed when eating away from home. It is not known if
participants took the entire folder with them when eating out or just the tracking sheet. The third
question was: Is there anything that you think it is important for the researchers to know about
the design of this fluid intake tracking system and it ease of use? The majority of respondents answered “no” or had positive feedback on the ease of use. The most common theme for improvement of the instrument was to make the sheets smaller.
Implications for Research
The AHA (2015) admits that little is known about which self-care skills are most problematic for
HF patients, and there is little evidence about specific therapeutic approaches and their impact
Discussion
147
on self-management outcomes. Studies regarding self-care behavior are typically qualitative
in nature and seek the patient’s opinion on his or her ability to adhere to self-care practices.
Incorporation of a valid fluid intake tracking instrument could provide more robust data regarding the day-to-day skills and management of unique situations required for adequate self-care
management. Although there have been studies on the impact of HF self-care management activities affecting readmission rates, it is unclear how much adherence to fluid restriction contributes.
In one study 25 percent of patients and informal caregivers cited nonadherence as a reason for
readmission; however, only 14 percent of cardiologists thought nonadherence was a primary reason
(Ziaeian & Fonarow, 2015). Without exception, studies in the literature search regarding the effects of
restricted fluid intake on the HF patient relied on patient self-reports of adherence to the daily
limit indicated in each study. No study was found that incorporated a standardized method for
participants to track their fluid intake. An excellent example is the study conducted by Holst,
Stromberg, Lindholm, & Willenheimer (2008) to describe self-reported fluid intake and its
effects on body weight, signs and symptoms of HF, quality of life, physical capacity, and thirst in
patients. Patients were educated to maintain a 1,500 ml maximum fluid intake and were instructed to
“measure carefully and write down their fluid intake.” The main study limitation identified by the
authors was that it was “the general opinion of the researchers that the patients were accurately
reporting their fluid intake.” There was no standardized tool to measure validity of patient selfreports, and 50 percent of the patients admitted to exceeding the set fluid limitation. Although
this study had no proof of how much fluid patients ingested, the authors concluded that a more
liberal fluid intake may be advisable in chronic HF patients who have been stabilized after an
initial unstable clinical state. By increasing the accuracy with which patients monitor and report
their fluid intake, studies regarding patient fluid intake can have a more meaningful impact. Use
of the FITS in HF research can increase the rigor of future studies by providing a valid tool for
measuring study participants’ fluid intake.
In its scientific statement, “Transitions of Care in Heart Failure,” the AHA (2015) recommended
that future research should determine the most effective and economically sound transition of
care interventions for HF patients. The AHA also states that these interventions should be broadly
applicable to HF patients. As the FITS instrument can be implemented in the hospital and seamlessly transition with the patient as he or she returns to the community, and is cost-effective, it lends
itself perfectly to future research on HF self-care management. The European Society of Cardiology (2011) recommends that future research in the area of self-care should focus on identifying
risk groups for poor self-care. Because FITS is a method that allows for immediate assessment of
the patients’ willingness and ability to adhere to a basic HF self-care activity, it has the potential to
help identify those at risk for poor self-care compliance.
Implications for Practice
The implementation of FITS can provide a reliable and valid method for the education of HF
patients on adhering to prescribed fluid restrictions. No extensive training is needed to learn how
to teach the use of the fluid intake tracking sheet to patients. Therefore, the instrument can be
implemented in a timely manner by a wide variety of care providers including patient care technicians,
bedside nurses, heart failure educators, advanced practice providers (APPs), and physicians. The
versatility of this instrument makes it beneficial when working with a range of HF patients, from the
newly diagnosed to those with advanced HF. Daily incorporation of the instrument during hospitalization will promote active participation on the part of the patient in self-care activities and provide opportunities for partnership and shared decision making with care providers. Introduction to
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Chapter 12 Validation of Fluid Intake Tracking System Designed for Heart Failure Patients
these concepts and skills will provide exposure early in the disease process. This will help to avoid
patients needing to learn these skills during the advanced stages of HF when they are suffering
from late-stage symptoms such as shortness of breath at rest and persistent fatigue. Use of the instrument in the inpatient setting can vastly improve the accuracy of fluid intake measurement on
the part of the nursing staff. This benefit will help to guide decision making and diuretic therapy
adjustments on the part of the APP and physician.
Currently, it is recommended that the transition of care from hospital to home include integration and coordination of care among the primary care physician, HF care specialists, and other
agencies such as home health and cardiac rehabilitation. The FITS instrument has tremendous
value in the outpatient setting, especially when healthcare systems do not have an HF clinic in place.
It has the flexibility to be effective with a larger population than those targeted by current hospital
discharge teaching methods. Owing to the easy reproducibility of the instrument, it can be utilized
by cardiology office practices, primary care providers, health clinics, and home health agencies. This
gives the instrument a wide reach with patients who are unable or unwilling to attend an HF clinic,
and those who utilize primary care physicians and health clinics for their HF management. Identification of patients at risk for nonadherence and increased patient education have been identified
by primary care providers as major contributors to success when caring for patients with chronic
conditions (Snyderman, Salzman, Mills, Herch, & Parks, 2014).
The instrument is flexible and can be reproduced in a variety of fashions, sizes, and combinations. Some facilities may choose to use only the fluid intake tracking sheet, while others may wish
to incorporate the educational material provided in the instrument as well. The simplicity of the
design makes developing the instrument into a mobile application for tracking fluid intake an obvious next step. A patent and App Store search revealed that although there are numerous applications
for people who are wanting to increase their fluid intake for health reasons, there is no application
for those who need to limit their fluid intake. A similar design, depicting a salt shaker rather than a
drinking glass, could be produced to help patients monitor and track their sodium intake. Last, the
instrument can be easily adapted for chronic kidney disease and hemodialysis patients who need
to minimize fluid intake and are given prescribed daily allowance parameters.
▸
Conclusion
Despite an abundance of studies on and education about improving self-care behaviors, lack of adherence remains a major contributor to hospital admissions and poor outcomes for HF patients. Inconsistency in educational methods and a lack of effective instrumental support of specific skills have been
cited as explanations for a lack of enduring progress in improving patient adherence. The implementation of a validated method for tracking fluid intake can create continuity in teaching and the reinforcement of these skills by the members of the healthcare team, thereby improving patient compliance.
The FITS instrument also has the potential to increase the quality of life for patients with HF
because its portability can instill confidence in their ability to adhere to their fluid restriction when
they are visiting with friends and family, running errands, and eating in restaurants. These implications suggest that the FITS instrument has the potential to be a powerful tool in the prevention
of poor self-management by and re-hospitalizations of patients with HF.
▸
Acknowledgments
The author would like to acknowledge Lauren Norton, FNP, for her assistance with this study.
References
149
CASE STUDY 121: AJ
The image of the water glass with measurements along the side was the result of a bedside
teachable moment while working with a patient who was angry at the nurse who later developed
the instrument for limiting his fluid intake. AJ was a 36-year-old man with a diagnosis of acute
decompensated idiopathic HF. He was admitted to the CCU after presenting in the ED with shortness
of breath at rest and lower extremity edema resulting from volume overload. His treatment included
high doses of diuretics to remove fluid from his body, blood pressure management, a low-sodium
diet, and 1,500 ml/24-hour fluid restriction. The nurse was told in a report that the patient had already
had a large cup of ice water that morning. The patient asked for more water shortly after the nurse
finished her morning assessment. The nurse discussed the patient being on a fluid restriction and told
him that he could not have more water at that time. AJ was livid, “Why are you telling me that I can’t
have water when the other nurse brought me water all night long? You can’t deny a man something
as basic as water!” After explaining the rationale, the nurse demonstrated how to write down and
add together the volume of the beverages on the breakfast tray and the water he already drank. This
frustrated AJ even further because he wasn’t able to perform the necessary math. Since there was no
water pitcher or graduated cylinder in the room to use as a teaching aid, the nurse drew a water glass
on a sheet of paper. When a line was drawn to show the patient how much fluid he had already taken
in with his breakfast and lunch, and how much allowance he had left for the day, his attitude suddenly
changed; “Oh man, that’s not very much to drink.” He became open to a conversation about what he
drank and was willing to try to take charge of his intake by drawing lines on the paper.
Exercise: A Day in the Life of an HF Patient
Unless you have a medical condition that prohibits you from doing so, limit your fluid intake to not
more than 1,500 ml for a full 24 hours. Be sure to include any items that would be liquid at room
temperature including ice, milkshakes, smoothies, and ice cream. You also need to account for foods
that contain liquid, such as soup. At the end of the fluid restriction, answer the following questions:
1.
2.
3.
4.
5.
How would you rate your level of thirst?
Did you feel deprived of your favorite beverages?
Was it easy to keep track of how much you drank in milliliters?
How difficult was it to measure and track everything that you took in?
Did you go over your fluid limitation? If so, why?
References
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the American Heart Association. Circulation Heart Failure, 6(3), 606–619.
American Heart Association. (2015). Transitions of care in heart failure: A scientific statement from the American Heart
Association. Circulation Heart Failure, 8, 384–409.
American Heart Association. (2017a). Heart disease and stroke statistics—2017 update: A report from the American Heart
Association. Circulation, 136(14), e1–459.
America Heart Association. (2017b). Evidence for therapeutic patient education interventions to promote cardiovascular
patient self-management: A scientific statement for healthcare professionals from the American Heart Association.
Circulation: Cardiovascular Quality and Outcomes, 10, e000025.
Bahrami, H., Kronmal, R., Bluemke, D. A., Olson, J., Shea, S., Liu, K., . . . Lima, J. (2008). Differences in the incidence of
congestive heart failure by ethnicity: The multi-ethnic study of atherosclerosis. Archives of Internal Medicine, 168,
2138–2145.
Bandura, A. (2004). Health promotion by social cognitive means. Health Education and Behavior, 31(2), 143–164.
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Bradley, E. H., Curry, L., Horwitz, L. I., Sipsma, H., Wang, Y., Walsh, M. N . . . Krumholz, H. M. (2013). Hospital strategies
associated with 30-day readmission rates for patients with heart failure. Circulation: Cardiovascular Quality and
Outcomes, 6, 444–450.
Centers for Medicare and Medicaid Services. (2012). Readmissions reduction program (HRRP). Retrieved from https://www
.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/AcuteInpatientPPS/Readmissions-Reduction-Program.html
Choi, J. (2011). Literature review: Using pictographs in discharge instructions for older adults with low-literacy skills. Journal
of Clinical Nursing, 20(21/22), 2984–2996.
Ciere, Y., Cartwright, M., & Newman, S. (2012). A systematic review of the mediating role of knowledge, self-efficacy and
self-care behaviour in telehealth patients with heart failure. Journal of Telemedicine and Telecare, 18(7), 384–391.
Criteria Committee of the New York Heart Association. (1994). Nomenclature and criteria for diagnosis of diseases of the
heart and great vessels (9th ed.). Boston, MA: Little, Brown & Co., 253–256.
Curtis, L. H., Whellan, D. J., Hammill, B. G., Hernandez, A. F., Anstrom, K. J., Shea, A. M., & Schilman, K. A. (2008). Incidence
and prevalence of heart failure in elderly persons. Archives of Internal Medicine, 168, 418–424.
Cutilli, C. C., & Schaefer, C. T. (2011). Case studies in geriatric health literacy. Orthopaedic Nursing, 30, 281–285; quiz 286–287.
Davis, K., Mintzer, M., Dennison-Himmelfarb, C., Hayat, M., Rotman, S., & Allen, J. (2012). Targeted intervention improves
knowledge but not self-care or readmissions in heart failure patients with mild cognitive impairment. European Journal
of Heart Failure, 14(9), 1041–1049.
Desai, A. (2015). The three-phase terrain of heart failure readmissions. Circulation: Heart Failure, 5(4), 398–400.
European Society of Cardiology. (2011). Self-care management of heart failure: Practical recommendations from the Patient
Care Committee of the Heart Failure Association of the European Society of Cardiology. European Journal of Heart
Failure, 13, 115–126.
Fincham, J. (2008). Response rates and responsiveness for surveys, standards, and the journal. American Journal of
Pharmaceutical Education, 72(2), 1–3. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2384218/
Greiner, M. A., Hammill, B. G., Fonarow, G. C., Whella, D. J., Eapen, Z. J., Hernandez, A. F., & Curtis, L. H. (2012). Heart
failure: Predicting costs among Medicare beneficiaries with heart failure. American Journal of Cardiology, 109, 705–711.
Heart Failure Society of America. (2010). 2010 guideline executive summary: Executive summary: HFSA 2010 comprehensive
heart failure practice guideline. Journal of Cardiac Failure, 16, 475–539.
Holst, M., Stromberg, A., Lindholm, M., & Willenheimer, R. (2008). Description of self-reported fluid intake and its effects
on body weight, symptoms, quality of life, and physical capacity in patients with stable chronic heart failure. Journal of
Clinical Nursing, 17(17), 2318–2326.
Joynt, K., & Jha, A. (2011). Who has higher readmission rates for heart failure, and why? Implications for efforts to improve
care using financial incentives. Circulation: Cardiovascular Quality and Outcomes, 4, 53–59.
Jurgens, C. Y., Lee, C. S., Reitano, J. M., & Riegel, B. (2013). Heart failure symptom monitoring and response training. Heart
Lung, 42(4), 273–280.
Lee, C. S., Moser, D. K., Lennie, T. A., & Riegel, B. (2011). Event-free survival in adults with heart failure who engage in
self-care management. Heart and Lung: Journal of Acute and Critical Care, 40(1), 12–20.
Maeda, U., Shen, B., Schwarz, E., Farrell, K., & Mallon, S. (2013). Self-efficacy mediates the associations of social support and
depression with treatment adherence in heart failure patients. International Journal of Behavioral Medicine, 20(1), 88–96.
Roger, V. (2013). Epidemiology of heart failure, Circulation Research, 113(6), 646–659.
Rothberg, M., Sivalingam, S., Ashraf, J., Visintainer, P., Joelson, J., Kleppel, R., & Schweiger, M. (2010). Patients’ and
cardiologists’ perceptions of the benefits of percutaneous coronary intervention for stable coronary disease. Annals of
Internal Medicine, 153, 307–313.
Snyderman, D., Salzman, B., Mills, G., Herch, L., & Parks, S. (2014). Strategies to help reduce hospital readmissions. Journal
of Family Practice, 63(8), 430–438. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/25350259
Srisuk, N., Cameron, J., Ski, C., & Thompson, D. (2015). Review: Heart failure family-based education: a systematic review.
Patient Education and Counseling, 99(3), 326–338.
White, M., Garbez, R., Carroll, M., Brinker, E., & Howie-Esquivel, J. (2013). Is “teachback” associated with knowledge
retention and hospital readmission in hospitalized heart failure patients? Journal of Cardiovascular Nursing, 28, 137–146.
Ziaeian, B., & Fonarow, G. (2015). The prevention of hospital readmissions in heart failure. Progress in Cardiovascular
Diseases, 58(4), 379–385.
CHAPTER 13
A Systematic Review
of Cardiomyopathy and
Peripartum Mortality
in the United States
Andrew Youmans
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the vulnerability of populations affected by peripartum cardiomyopathy.
2. Identify challenges with detecting peripartum cardiomyopathy.
3. Discuss potential areas for nursing research on peripartum cardiomyopathy.
▸
Introduction
Pregnancy is one of the most vulnerable periods of a woman’s life. It is a time of balance between
maternal and fetal well-being. The physiological effects of maternal stress and chronic disease have
the potential to affect both mother and fetus (Sailasree, Srivastava, & Mishra, 2017). One example
is peripartum cardiomyopathy (PPCM), a potentially lethal condition. PPCM is a new onset of
heart failure that affects women during pregnancy or during the first 5 postpartum months (Fuster,
Walsh, & Harrington, 2011; Hilfiker-Kleiner, Haghikia, Nonhoff, & Bauersachs, 2015).
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 13 A Systematic Review of Cardiomyopathy and Peripartum Mortality
Sudden death from PPCM can occur up to 5 months post partum. PPCM is not always fatal
but fatalities can happen months or years past this 5-month period. The time frame of this disease demonstrates a key shortcoming in calculating maternal mortality data. The World Health
Organization (WHO) definition of maternal mortality includes death up to 42 days after the end
of pregnancy, including live birth or abortion (WHO, 2017). Sudden death from a cardiac event
within five months of the end of pregnancy may not be calculated as a maternal death, although
it is pregnancy-related.
Cardiomyopathies of all types account for 11 percent of maternal death in the United States,
and when combined with cardiovascular disease in general, account for 26.5 percent of all maternal deaths (Creanga, Syverson, Seed, & Callaghan, 2017). The etiology of PPCM is unknown and
it occurs in the absence of prior heart disease, although current research has identified some risk
factors (Hilfiker-Kleiner et al., 2015).
▸
The Epidemiology of Peripartum Cardiomyopathy
Incidence
The incidence of PPCM varies across the world. Nigeria has reported a rate of 980 cases per 100,000
live births compared with ranges of 100–980 in sub-Saharan Africa (Gentry et al., 2010). Haiti has
one of the highest incidences in the Western Hemisphere with 334 cases per 100,000 live births
(Gentry et al., 2010). The rate in the United States is unknown because there is a wide variation
in studies and regional differences (Kolte et al., 2014). An analysis of one U.S. hospital’s discharge
data suggests an incidence of 31 cases per 100,000 live births among the general population of pregnant women (Mielniczuk et al., 2006). In a study in Augusta, Georgia, among African American
women, Gentry et al. (2010) reported 185 cases per 100,000 live births. Analysis of other U.S. studies
confirms that the frequency of PPCM is significantly higher among African American women
(Gentry et al., 2010)
Risk Factors
Maternal Mortality in the United States
Across all causes, including PPCM, African American women in the United States have a significantly higher maternal mortality ratio than other racial or ethnic groups (Creanga et al., 2017).
There is enormous disparity with African American mothers dying at a rate of 43.5 deaths per
100,000 live births compared to White mothers who die at a rate of 12.7 deaths per 100,000 live
births (Creanga et al., 2017).
PPCM and African Americans Mothers
African American women have a significantly higher risk of developing PPCM (Gentry et al.,
2010). As the cause of PPCM is unknown, it is impossible to know exactly which risk factors clearly
lead to the development of PPCM. However, untreated chronic hypertension, pregnancy- induced
hypertension, and preeclampsia are key risk factors (Bibbins-Domingo et al., 2009; Hilfiker-Kleiner
et al., 2015).
The Epidemiology of Peripartum Cardiomyopathy
153
Disparity with cardiovascular mortality does not apply solely to childbearing; it is seen in the
African American general population as well. According to the CARDIA study, African American
women and men are 20 times more likely to develop heart failure prior to age 50 compared to
White women and men (Bibbins-Domingo et al., 2009). One of the shocking conclusions of the
CARDIA study is that heart failure can be predicted and prevented 10–15 years in advance of the
average age of 39 years old when African American women and men are diagnosed with heart failure
(Bibbins-Domingo et al., 2009).
Genetic and Epigenetic Factors Affecting African American Mothers
One hypothesis for the high incidence is genetic predisposition to PPCM among the African
American population (Kuzawa & Sweet, 2009) as well as among women of African heritage around
the world (Gentry et al., 2010). Research in epigenetics suggests that the allopathic stresses of slavery
and poverty over generations may have led to activation and deactivation of certain genes within
the genome of individuals (Kuzawa & Sweet, 2009). Epigenetic effects on maternal and fetal health
have not been proven.
Other Possible Risk Factors
Other risk factors that have been proposed for PPCM, regardless of race, are conditions of environmental stress, poor nutrition, and lack of preventative and prenatal care (Bibbins-Domingo
et al., 2009); the use of tocolytics to calm contractions during pregnancy, family history of cardiac
disease, and multi-fetal pregnancy (Carlin et al., 2017; Hilfiker-Kleiner et al., 2015); as well as primigravida status and conceiving with in vitro fertilization (Shani et al., 2015). It is not possible
to assign causation to these covariate factors, which are found among many population groups.
Further research is needed.
The Social Impact of PPCM
There is a disparity between the United States and other developed countries in maternal and
parental leave (Neckermann, 2017). Maternity and/or parental leave is not widespread in the United
States and especially for those of lower socioeconomic status or those who hold jobs without paid
leave benefits. For many struggling families, extended leave from paid employment after childbirth is not possible economically (Neckermann, 2017). Those with more financial resources are
at an advantage in the face of inadequate national support for maternal and family leave policies.
Under the best circumstances, following a normal vaginal or cesarean birth, new mothers and
their families struggle with balancing family responsibilities and financial burdens. A severe complication, like PPCM, which may necessitate a lengthy period away from work for the mother and
increased stress on the spouse/partner, can be devastating to the new family. The stress increases
if there is minimal extended family and community support for infant care, and the mother was
planning to be the primary care provider for the new baby.
Most likely, the woman with PPCM symptoms will be admitted to an intensive care unit or
coronary care unit for diagnostic testing, evaluation, and treatment (Carlin et al., 2017). Medications may not be compatible with breastfeeding (i.e., diuretics, such as Lasix [furosemide]),
which may decrease milk supply to the point where breastfeeding is suppressed. The disruption of
maternal-infant bonding and the benefits of breastfeeding (Kramer & Kakuma, 2012) may be subsumed to the maternal crisis.
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Chapter 13 A Systematic Review of Cardiomyopathy and Peripartum Mortality
Prevention of PPCM
Screening
With the exception of community-based screening for hypertension across the general population,
there are no screening guidelines for the prevention of PPCM. In the absence of serious symptoms, diagnostic testing during pregnancy needs to be used cautiously due to cost and potential
fetal damage. The ultrasound echocardiogram is safe in pregnancy.
Treatment of Hypertension Disorders
Chronic hypertension, pregnancy-induced hypertension, and preeclampsia are potentially modifiable risk factors for PPCM (Bello, Rendon, & Arany, 2013; Carlin et al., 2017; Hilfiker-Kleiner et al.,
2015). These conditions may be untreated due to inadequate access to primary health care or prenatal care (Carlin et al., 2017). Medicaid, serving primarily low-income persons, pays for almost half
of all births in the United States (Markus et al., 2013), and 40 percent of women who delay prenatal care report a lack of insurance or financial stress as the reason (Health Resources and Services
Administration [HRSA], 2015).
Targeted Treatment by Race and Ethnicity
The incidence of hypertensive disorders in pregnancy in the United States is rising. African American
women are more likely to die from pregnancy-related hypertension than other women. Hypertension is a silent killer, often present without symptoms (American Heart Association [AHA], 2017).
Research on hypertension control among the general population indicates that African Americans
often require different and more aggressive therapy, such as calcium channel blockers and diuretics,
compared to other ethnicities who are usually treated, at least initially, with angiotensin-converting
enzyme inhibitors (Gu, Yue, Desai, & Arquilian, 2017; Lackland, 2014). The Eighth Joint National
Committee (JNC8) algorithm for hypertension identifies specific decision-making choices based
on race (Gu et al., 2017).
Racial Differences in Hypertension Management in Pregnancy
Research is needed on racial and ethnic differences in treatment of hypertension in pregnancy. Gu
et al. (2017) propose that if the treatment of hypertension in nonpregnant African Americans requires
aggressive therapy, then pregnant African American women with chronic or pregnancy-related
hypertension may also need to be treated at an enhanced level.
Differences in treatment based on race or ethnicity may raise red flags. Due to a history of
unethical medical experimentation on the African American community in the United States,
as described in The Belmont Report (U.S. Department of Health and Human Services [DHHS],
1979), African- Americans may be reluctant to trust the medical community (Armstrong, Ravenell,
McMurphy, & Putt, 2007). Regardless of race or ethnicity, hypertension during pregnancy can have
serious implications for childbearing women and their fetuses and needs to be managed (Abalos,
Duley, & Steyn, 2014).
Diagnosis
▸
155
Diagnosis
The Dilemma
Signs and symptoms of PPCM are identical to other types of heart failure: fatigue, shortness of
breath, peripheral edema, and orthopnea (Fuster et al., 2011). These signs and symptoms are also
common, nonpathological complaints in the third trimester of pregnancy that can mask PPCM.
This poses a dilemma for healthcare providers: What is normal pregnancy and what is pathological?
Normal Heart Changes in Pregnancy
During pregnancy, increased blood volume causes slight enlargement of all four chambers of the
heart. Heart murmurs may be normal in pregnancy. In tandem with increased blood volume, the
uterus expands upward, transitioning from a pelvic to an abdominal organ. This pushes abdominal organs into realigned positions and places pressure on the diaphragm. This realignment shifts
the heart into a more horizontal position (Blackburn, 2013).
Diagnosing PPCM
Although PPCM is usually diagnosed in the postpartum period (Hilfiker-Kleiner et al., 2015),
some cases are diagnosed late in pregnancy. For these women, induction or cesarean delivery is
often performed upon diagnosis (Carlin et al., 2010). Most women who are diagnosed with PPCM
are classified at New York Heart Association (NYHA) Class III and IV, the most severe classes of
heart failure with symptoms present at minimal exertion or at rest (Hilfiker-Kleiner et al., 2015).
If PPCM is suspected, it is usually detectable with basic physical examination techniques and
readily available diagnostic testing (Hilfiker-Kleiner et al., 2015). PPCM is a type of dilated cardiomyopathy, where chambers of the heart enlarge and weaken (Hilfiker-Kleiner et al., 2015). Positive
physical exam findings are jugular vein distension, crackles or rales in the lower lung fields, pitting
edema, and a displaced point of maximal impulse (PMI) of the apical pulse (Fuster et al., 2011). The
PMI of the apical pulse should not extend much past the midclavicular line of the left chest, and a
laterally displaced PMI is potentially a serious finding (Hilfiker-Kleiner et al., 2015).
The standard laboratory test for heart failure in the nonpregnant population is the B-type
natriuretic peptide (BNP). Performing this lab test on a normal healthy pregnant woman will show
an elevated reading, but markedly elevated readings can indicate heart failure (Hilfiker-Kleiner
et al., 2015).
Definitive diagnosis can be made with echocardiography (ECG) (Hilfiker-Kleiner et al., 2015).
ECG is an inexpensive and excellent diagnostic tool (Garcia & Holtz, 2000. While it is possible to
have ECG changes in normal pregnancy due to the more horizontal position of the heart (Garcia &
Holtz, 2000), left ventricular hypertrophy in a 12-lead ECG may indicate dilated cardiomyopathy
(Hilfiker-Kleiner et al., 2015). Collaboration with cardiology services is essential.
Radiology testing is not often used in the antenatal period due to the risks of teratogenic
effects of ionizing radiation. PPCM may present on a chest X-ray with an enlarged cardiac silhouette or shadowing in the lung bases. Abdominal or chest computerized tomography (CT) may show
enlarged vena cava and other dilated vessels (Fuster et al., 2011).
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Chapter 13 A Systematic Review of Cardiomyopathy and Peripartum Mortality
Disease Trajectory and Management
Management is similar to heart failure of other etiologies (Carlin et al., 2010). The greatest factor in
recovery is the degree of impact on the heart’s ejection fraction (EF) (Carlin et al., 2017). The more
severe the impact on the heart’s EF, the less the likelihood of recovery. Even with recovery, PPCM
can greatly affect a woman’s life. At minimum, she will require regular follow-up with a cardiologist. She will also likely need diet and lifestyle modifications (Fuster et al., 2011). There is risk for
thromboembolism, arrhythmia, and persistent, chronic cardiomyopathy (Gentry et al., 2010). She
is at potential risk for further harm to her heart with subsequent pregnancies (Carlin et al., 2010).
Although it is possible to carry a term pregnancy without further problems, a woman and her partner
need careful counseling in making this decision because the outcome is unpredictable. The patient
should make this decision in collaboration with an interdisciplinary team to include a cardiologist.
In women who do not recover, the disease follows a progressive trajectory (Fuster et al., 2011).
While this progressive course can be managed among an older population until near or even past the
age of average life expectancy, heart failure in a young woman of childbearing age has the potential
for shortened life span. While a woman with PPCM can live with symptoms at an NYHA Class I or
II for many years, eventually symptoms will progress to a higher class and she will need intervention,
such as a left ventricular assist device (LVAD), heart transplant, or palliative care (Carlin et al., 2017).
Hospitalization, especially involving intensive care, cardiac transplant, LVADs, and medications
is incredibly expensive. An estimated average cost for a heart transplant is $1.5 million (National
Foundation for Transplants, 2017). The financial impact can be devastating for a family.
Cardiac Transplant
If the PPCM is severe, the woman will need immediate drastic intervention. She may be listed for
a heart transplant. Transplant candidates often spend months waiting in intensive care units, often
with invasive monitoring with a pulmonary artery catheter, such as a Swan-Ganz catheter (Carlin,
2017). The reality of being stuck in the same room for months, apart from her child and her family, waiting on another human being to die in order to have a chance at life can place significant
psychological strain on the woman and her family.
There is an established system to determine who is a candidate for receiving an organ transplant.
Socioeconomic issues such as a history of smoking, recreational drug use, criminal record, employment, income, and compliance with previous medical therapies are some of the factors considered
in listing a woman for transplant. Persons of color and of low socioeconomic background are at a
higher chance of not being listed. If listed and transplanted, persons of color have poorer outcomes
(Singh et al., 2010). In the United States approximately 20 people die each day waiting for some
kind of a transplant (United Network for Organ Sharing, 2017).
If the woman received a heart transplant, rejection and vasculopathy are risks in the post-transplant
period (Tobis, 2017). After transplant, the woman faces frequent heart catheterizations for endomyocardial biopsies (Fuster et al., 2011) and persons receiving any kind of transplant must take
lifelong antirejection drugs that increase the chances of infection and cancers (Kälble et al., 2017).
Left Ventricular Assist Device
Some women are not candidates for organ transplant and may receive an LVAD (Carlin et al., 2017).
The LVAD is a mechanical pump that is surgically implanted into the woman’s heart. A drive line
connects the internal pump to an external control box and batteries. In order to avoid infection, this
Case Study
157
drive line must be kept immaculately clean, similar to a central venous catheter (van Valen et al.,
2017). The woman must always carry spare batteries and take long-term anticoagulation with the
attendant risks (van Valen et al., 2017). The following case study exemplifies the difficulties inherent in the management of PPCM and the impact on the woman, her family, and the community.
CASE STUDY 131: NO SAFETY NET: A STORY OF
DISPARITY AND VULNERABILITY
Debra, age 28, is pregnant with her first child. She does manual labor in a warehouse earning slightly
above minimum wage. She has no work-related benefits or health insurance. For years she has only
sought care at an urgent care or emergency department (ED) if ill. She has not started prenatal care
due to lack of finances.
At 30 weeks gestation, Debra presents to the ED with shortness of breath. The ED physician notes
elevated blood pressure and refers her to the OB/GYN/midwife service at the hospital. He explains that
women often get short of breath during pregnancy. Debra confides in the ED nurse that she is very
embarrassed about having no finances for prenatal care. The ED nurse contacts the social worker who
helps Debra apply for pregnancy Medicaid.
Four weeks pass before the Medicaid paperwork is completed and Debra is scheduled to see a
provider at the local hospital. The nurse-midwife is very concerned about her elevated blood pressure
(148/86) and begins evaluation for preeclampsia. She orders blood work, urine analysis, fetal nonstress
test, and an ultrasound for a biophysical profile. Debra’s lab testing shows no signs of preeclampsia, so
after collaboration with one of the group’s physicians, the midwife asks Debra to keep a daily blood
pressure log, checking it at the free blood pressure machine at the local pharmacy. She also educates
Debra on warning signs of preeclampsia and schedules her to come back in three days.
The next day Debra returns to work. That afternoon she feels an increase in fatigue, weakness, and
shortness of breath. She collapses at work and her supervisor calls an ambulance. When she arrives at
the ED, Debra asks for her midwife who hastily goes to the ED. The ED provider, a nurse-practitioner,
orders a 12-lead ECG that shows signs of left ventricular hypertrophy, prompting a cardiology consult.
A STAT echocardiogram reveals a dangerously decreased ejection fraction. Debra is diagnosed with PPCM.
The cardiologist refers Debra to maternal-fetal medicine who quickly evaluates her and
recommends immediate cesarean delivery. The midwife stays with Debra as she delivers a preterm,
low-birth-weight infant. The baby, Janelle, is admitted to the neonatal intensive care unit (NICU), and
Debra is transferred to the cardiac intensive care unit for monitoring and diuresis. The diuretics inhibit
her milk supply to an insignificant amount and fatigue prevents her from being able to see Janelle in
the NICU more than once a day. Her aunt, Debra’s only family support, travels 200 miles to help Debra
and care for Janelle after discharge from the NICU.
Debra does not recover and is transferred to the transplant center several hours away. She
requires an invasive pulmonary artery catheter to adjust the doses of her inotropic medications
while awaiting a heart transplant. Eight months after her diagnosis, she receives a transplant. While
recuperating from the transplant. Debra spends another two months at this site being monitored for
transplant rejection.
Debra’s aunt has cared for Janelle for almost a year now. Debra has faced adjustment to
motherhood, caring for her new heart and managing her drug regimen several hours from home. She
lost her job and now must find employment so she can provide for her child. Coworkers and friends
have helped with fund-raising, and some charitable organizations have provided some assistance.
Debra’s limited savings are exhausted with helping her aunt care for Janelle and paying some of the
uncovered medical bills. This family has no safety net, and the future is uncertain.
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Chapter 13 A Systematic Review of Cardiomyopathy and Peripartum Mortality
Conclusion
PPCM has the potential for devastating, life-altering changes for childbearing women and their families. With current knowledge of the risk factors for PPCM, healthcare providers and public health
workers need to focus on the prevention, identification, and management of hypertension before
and during pregnancy with special attention to the impact of disparity in access to health care.
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CHAPTER 14
Life Beyond Movement:
A Life History of a Male
Quadriplegic
Amanda P. Knowles, Anny Sosebee, and Edwige Goby Konwo Tayo
OBJECTIVES
At the end of this chapter, you will be able to:
1. Review the dynamics of quadriplegia.
2. Identify key steps in conducting a life history.
3. Review the challenges and successes of an individual quadriplegic.
▸
Introduction
The research question investigated was the process that adult male quadriplegics use to achieve success following a spinal cord injury (SCI). Individuals who have suffered an SCI must be able to positively adjust to their injury in order to achieve a stable level of psychological and social functioning,
which is why the resilience theory supported this qualitative research study conducted specifically on the SCI population. To conduct this research, the researchers assumed that the participant
told the truth as he saw it. In this study, the conceptual definition of the term spinal cord injury was
defined as an injury of the spinal cord that causes motor and/or sensory loss to the upper and/or
lower extremities. Another important term for this study was quadriplegia, which is an injury of the
cervical spinal cord between the C1 and C8 segments, including the organs (Nas, Yazmalar, Sah,
Aydin, & Ones, 2015). An expected limitation to the study design was that due to the participant’s
injury, he may not have remembered details related to his injury.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 14 Life Beyond Movement: A Life History of a Male Quadriplegic
The topic of SCIs is significant to the nurse practitioner (NP) because NPs diagnose and treat
SCIs in a variety of settings, including acute care, rehabilitation, and family practice. NPs manage
the ongoing care surrounding SCIs, which includes ensuring that SCI patients have the appropriate
education, training, and rehabilitation services. Also, NPs are valuable members of the interdisciplinary team because they help with coordination of care, for example, making sure that necessary
medical equipment is attainable for SCI patients. NPs decrease physicians’ and psychiatrists’ time
constraints and workload demands in rehabilitation centers, which improves quality of life for
patients residing in these centers since they receive more focused care. If NPs are not properly educated and trained about required SCI care, then they will not be able to provide accurate education
or treatment to meet these patients’ unique needs.
▸
The Literature
The literature review gave a detailed description of the process that adult male quadriplegics use
to achieve success following an SCI. Full-text research articles that were reviewed discussed male
quadriplegics achieving success following an SCI and were selected from a search of GALILEO,
MEDLINE, CINAHL, PubMed, Cochrane, EBSCOhost, and clinical medicine and life sciences
databases. Initially, a 10-year literature review resulted in a total of 1,754 studies that were examined when the variables adult male quadriplegics were searched. The literature search was too
broad; therefore, the search was narrowed down to the last 5 years, including the additional variable
success, which then produced 521 studies. Finally, the variable success was modified to achieving
success. A total of six relevant studies were obtained as the final focus of the literature review.
All studies in the literature review were published after 2012. The literature review was organized
into four major concepts, which included resilience, rehabilitation, finances, and quality of life.
Resilience
Kilic, Dorstyn, and Guiver (2013) and Monden et al. (2014) both agreed that one essential psychological process in the long-term management of SCI participants is resilience. Kilic et al. (2013)
found that resilience is promoted in SCI participants by utilizing mood management strategies and
self-efficacy beliefs, which are examples of targeted rehabilitation interventions. Kilic et al. (2013)
went into further detail regarding the effects of depression, anxiety, and stress on SCI participants
achieving resilience, whereas Monden et al. (2014) only discussed depression, not the effects of
anxiety or stress. Monden et al. (2014) and Kilic et al. (2013) both focused on rehabilitation goals;
however, Monden et al. (2014) described additional variables that helped participants achieve
resilience, which was not mentioned in the study by Kilic et al. (2013). According to Monden et al.
(2014), being viewed as an inspiration to others, such as being a role model to those with similar
SCIs, helped SCI participants achieve resilience by giving them the determination they needed to
continue overcoming their daily struggles. Throughout the research of Monden et al. (2014), many
SCI participants also found that their spirituality was a strong factor in achieving resilience. Many
participants explained that their traumatic experiences were made meaningful through their faith,
which positively impacted their ability to adapt (Monden et al., 2014).
Rehabilitation
Guzelkucuk et al. (2015) and Nas et al. (2015) focused on the concept of rehabilitation in achieving
success after an SCI; however, these articles did not examine rehabilitation related to resilience as
The Literature
163
Kilic et al. (2013) and Monden et al. (2014) previously discussed. Guzelkucuk et al. (2015) specifically
studied the length of stay during rehabilitation related to the mechanism of SCI, the level of SCI,
and the participant’s age. Nas et al. (2015) agreed with this approach and discussed these same
factors as Guzelkucuk et al. (2015); however, Nas et al. (2015) additionally provided an in-depth
explanation of SCI complications related to rehabilitation goals. Nas et al. (2015) explained that
rehabilitation processes for SCI participants were ongoing, requiring years of therapy, with goals
of preventing physical, psychosocial, and economic complications. Treatment and rehabilitation
processes for SCI participants consisted of both acute care with early surgical interventions and
long-term treatments throughout life (Nas et al., 2015).
Finances and Quality of Life
Sakakibara, Hitzig, Miller, Eng, and the SCIRE Research Team (2012) and Thompson, Mutch,
Parent, and Mac-Thiong (2015) both agreed that finances and quality of life affected SCI participants. Sakakibara et al. (2012) discussed quality of life immediately following SCI as compared to
follow-up years later, in which quality of life was shown to increase significantly 16 years after an
SCI. Sakakibara et al. (2012) reported that the age of onset of SCI correlated to an improvement in
a participant’s life satisfaction, which included finances. Sakakibara et al. (2012) further identified
that satisfaction with finances was achieved on average 15 years after a participant’s SCI. Thompson et al. (2015) did not focus on quality of life related to the age of onset of a participant’s SCI.
Thompson et al. (2015) emphasized SCI participants having decreased quality of life when they
experienced significant financial burdens. Thompson et al. (2015) estimated that participants who
were diagnosed with quadriplegia cost three times more than participants diagnosed with paraplegia.
Areas of Agreement and Disagreement
Regarding the overarching topic of SCI participants achieving success after an SCI, there were many
areas of agreement throughout this literature review relating to the concepts of resilience, rehabilitation, finances, and quality of life. Kilic et al. (2013) and Monden et al. (2014) both agreed that resilience could be applied to SCI participants, which enabled these participants in positively adjusting
to their injury and overcoming life challenges. Kilic et al. (2013) and Monden et al. (2014) provided
examples of resilience, which allowed SCI participants to attain a secure level of psychological and
social functioning. Guzelkucuk et al. (2015) and Nas et al. (2015) were both in agreement about the
impact of rehabilitation factors on SCI participants in achieving success. Sakakibara et al. (2012)
and Thompson et al. (2015) both agreed that financial burdens significantly impacted SCI participants’ quality of life. The six articles discussed throughout this literature review had many different focus areas for their research but did not have any major areas of disagreement.
Gap in the Literature
One major gap trending throughout the literature was the lack of education provided to SCI participants following their injuries. Even though the articles in the literature review identified what
type of specific education was lacking for SCI participants, the literature did not discuss plans for
implementation. One example was found in the study by Guzelkucuk et al. (2015), in which the
researchers mentioned a need for increased education related to motorcycle helmet use, motor
vehicle seat belt use, and diving safety knowledge; however, they did not carry out a plan to provide
this necessary public awareness. Additionally, Nas et al. (2015) discussed the need for appropriate
SCI education during the rehabilitation period including stability and strength training for sitting
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Chapter 14 Life Beyond Movement: A Life History of a Male Quadriplegic
and transportation. Nas et al. (2015) did not mention any particular educational programs that
were developed or implemented, which was the pattern throughout the entire literature review.
Throughout this qualitative study, this gap in the literature did not hold true according to the one
male quadriplegic participant interviewed.
State-of-the-Art Summary
The state-of-the-art consensus throughout the literature review revealed that resilience, rehabilitation, finances, and quality of life were all factors that impacted the ability of SCI participants in
achieving success. SCI participants have the potential to improve their overall level of functioning using these major concepts. Based on the major gap discovered throughout current literature,
targeted educational interventions could be implemented to enhance the potential of adult male
quadriplegics in overcoming their injuries.
▸
Methodology
Design and Sample
A life history study design was the method used to examine the process that adult male quadriplegics use to achieve success following an SCI. A life history study design is the narrative selfreport of a person’s life experiences based on a topic of interest. In this study, the focus was on life
experiences centered on SCIs. Since this study design was a life history, one participant was used
as the study sample size. The participant was recruited utilizing the method of purposive sampling.
Purposive sampling was used because of the recruited participant having mutual connections with
one of the researchers. The researchers agreed to provide for the protection of the right and welfare of the research participant by reading and agreeing to the Kennesaw State University’s Federal-wide Assurance of Compliance. To obtain informed consent, the researchers presented the
participant with a consent form describing the research study, including confidentiality requirements. The participant was required to sign the research study consent form, as well as give a verbal
consent while being tape-recorded. To code the data, a pseudonym was used in place of the participant’s legal name to protect confidentiality. Data were stored on a tape recorder and then transcribed, with only referring to the participant by his pseudonym, “Steven.” After the research study
was completed, the researchers discussed keeping the data from the tape recording and transcription for 3 years and then destroying it.
Setting
The participant being interviewed determined the setting for the data collection, based on where
the participant felt the interview would maintain his privacy and comfort. The researchers’ original
plan was to interview the participant in his home in his living room; however, the participant preferred to conduct both interviews at his office.
IRB Statement
The researchers obtained IRB approval from Kennesaw State University prior to starting the
interview process.
Methodology
165
Instrumentation
A semistructured in-person interview consisting of six open-ended interview questions was utilized
to interview the participant during two separate occasions. Holding two separate interviews allowed
the participant to increase rapport with the researchers and to not feel overwhelmed with the interview process. The researchers began the interview with the statement “Tell me your story,” which
allowed the participant to guide the direction of the interview. Additional interview questions included
the following: “Describe the most important lessons you have learned since your SCI. What was the
hardest thing you have ever had to do? Who or what was the greatest influence in your life in achieving success? Give us examples of some principles that you live by. What are the greatest changes you
have experienced, both personally and professionally?” During the interview, one primary investigator interviewed the participant, with co-investigator number one managing the documentation for
the first encounter. The second encounter had co-investigator number one becoming the primary
investigator, and co-investigator number two managing the documentation. Only two out of three
investigators were present during each encounter, in order to maintain the participant’s comfort.
Rigor and Data Analysis
A primary data analysis was used to analyze the results by writing a transcription of the interviews.
The research proposal provided sufficient descriptive data that will allow other researchers to use
similar methodology and ensure replicability of the research study. The researchers listened and
observed carefully, being candid, and recording correctly during the interview in order to obtain
accuracy of the research methodology. Additionally, the researchers transcribed the interview early,
used primary data in the report, used all data in the final report, and wrote accurately in order to
maintain the accuracy of the research study.
Procedures
The first step of the data collection was to allow the participant to describe his story in his own
words, beginning with the six interview questions previously discussed. The length of the interview
was ultimately decided by the participant; however, the researchers originally planned on interviewing the participant for approximately 1 to 1½ hours, so as to not overwhelm the participant.
The length of the initial interview was 1 hour and 10 minutes. After the first interview was conducted, the primary investigator and co-investigator number one transcribed the tape recording,
which elicited important information from the meeting. The first interview was analyzed by comparing answers of the six interview questions to determine if the participant explained the process
of his success following his SCI. This analysis enabled the researchers to determine what crucial
information was missing, in order to ask more focused questions during the second interview. The
focused interview questions for the second interview included: “Was there educational support provided to you following your SCI? Tell us what education you felt was lacking after your SCI. Are you
currently involved with helping newly diagnosed SCI patients, and if so, how?” Focused interview
questions during the second interview enabled the researchers to elicit information pertinent to
the study. Data collection during the second interview was similar to the first interview, however,
the questions were modified based on the results from the first interview. The second interview
was approximately 30 minutes in length. Once both of the interview sessions were completed, the
researchers compiled all the data by accurately transcribing the interview sessions. After the second interview, the researchers analyzed all the data for the study.
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Chapter 14 Life Beyond Movement: A Life History of a Male Quadriplegic
During the first month of the study in June 2017, the participant was recruited informally.
Also, during this first month, the researchers obtained permission from agencies, submitted the IRB
protocol, and scheduled the in-person interviews once the IRB approval was granted. The second
month of the study, in July 2017, the researchers conducted and analyzed the first interview. The
third month, in August 2017, the researchers conducted the second interview with the participant,
as well as analyzed all the study data. During the fourth and fifth months, in September and
October 2017, the researchers met approximately four times biweekly and discussed the study
results. Finally, during the sixth month, November 2017, the researchers submitted the final study
report, which included changes made to the study.
▸
Results
Discussion of Sample
Steven is a 57-year-old Caucasian male quadriplegic who suffered an SCI at the age of 18. Steven
was born in Jacksonville, Florida, and raised with his two brothers by his mother in Central Florida.
At the age of 18, Steven wanted to “see what life was all about” and decided to move to California
with his best friend Pete. Once in California, Steven was into the party scene and beach life, with
ultimate goals of one day moving to Australia. Up to this point in his life, Steven was just a “typical
kid” who enjoyed simple pleasures, such as playing football, baseball, and guitar.
On August 6, 1982, Steven’s “life changed forever.” Steven and some friends drove to Mexico
for the day to go surfing, which was another passion of Steven’s. Steven does not recall the moments
leading up to his traumatic surfing accident that day and stated he “blanked out.” Three days later,
Steven awoke in the respiratory intensive care unit (ICU) at a local hospital in San Diego, California. Steven was transferred to Piedmont Hospital in Atlanta, Georgia, after a few weeks to be closer
to his father. Steven’s surfing accident resulted in an injury at the level of the C5 vertebra, making
him a quadriplegic for life.
Discussion of Results
After analyzing the research findings, the researchers changed two concepts and discovered multiple
subconcepts. Resilience, rehabilitation, social support, and spirituality were found to be important
factors that impacted the ability of SCI participants to achieve success. The major concepts were
organized according to the prevalence of each theme during the interviews with the participant.
Resilience was the most commonly encountered concept, followed by rehabilitation, social support,
and then spirituality. The researchers analyzed the data, resulting in the creation of subconcepts.
Resilience and spirituality did not reveal specific subconcepts since the participant was very
general while describing these topics during his interview. Rehabilitation and social support had
clearly defined subconcepts since the participant went into more detail regarding these concepts.
Resilience
Resilience was the most frequently encountered concept throughout the interviews with the participant. While Steven was recovering from his SCI at Shepherd Center, Steven had a lot of time
for self-reflection and often thought, “What am I going to do when I get out of these four walls?”
Steven stated that he had a choice following his SCI: “Choose to be happy or to be miserable. Since
I don’t like miserable people, I wasn’t going to be one of those people.” Even today, 37 years later,
Results
167
Steven stated that he still finds himself out at a restaurant with people staring at him. Steven often
thinks, “What are they staring at? Oh, that’s right. I am in a wheelchair” with a slight chuckle. “You
eventually get to the point where you forget that you’re in a wheelchair.”
One of the most important lessons that Steven described was a prime example of resilience.
While at the Shepherd Center, Steven’s first day outside his room was an eye-opening experience.
He stated that he rolled himself out to a communal room in his wheelchair and saw a couple of guys
throwing a football and playing catch in their wheelchairs. Steven’s initial thought was that he was so
envious of these guys because they could use their hands and fingers to grip the ball and throw it, in
which Steven did not have this level of functioning. Steven recalled the times he would play sports
and play his guitar and thought to himself, “Sad, sad, poor, poor me. If I could just use my hands,
I could play the guitar like I used to.” Steven continued to tell his story, in that not even 1 hour later,
he witnessed a patient in a high-backed chair with his arms strapped to his chair. Steven got closer to
this patient and saw that he couldn’t move any part of his body below his neck. This patient was being
fed by someone and even had to have the nurse scratch his head for him. “Then it hit me, at least
I can scratch my own head and feed myself. I will never, ever pity myself or be sorry for myself again
because at least I can do those things. Shut up Steven and get on with your life!” Steven pointed
out to the researchers during the interview that if his SCI occurred one half of an inch higher into
his fourth vertebra, he would not be able to have any function of his arms or hands. According to
Steven, this moment was the most profound lesson following his SCI that ultimately changed his
mind-set forever.
Because of the profound lessons that Steven learned immediately following his SCI, he knew
that once he recovered, he would want to “be available to give back to those in need.” Currently,
Steven continues to volunteer at Shepherd Center where he will speak with recently injured SCI
patients based on age, level of injury, and interests prior to their injury. Steven also meets twice
weekly with a man who has an unknown diagnosis of paralysis without an injury. Steven hopes that
with his resilient attitude he will be able to empower other SCI victims to overcome their struggles.
Rehabilitation
After Steven spent a few weeks in a hospital, he was transferred to a spinal cord rehabilitation
center. Steven spent a total of 6 months there where he received extensive education regarding his
SCI. Educational topics included preventing ailments such as pressure ulcers and dysreflexia. After
analyzing the interviews, the researchers further divided rehabilitation into two, more specific subconcepts: physical therapy and counseling.
Physical Therapy
One major portion of Steven’s rehabilitation during his 6 months at Shepherd Center was physical
therapy. Steven recalled his very first day of rehabilitation at Shepherd Center, when his physical
therapists wanted to get Steven out of bed and into a chair. Steven stated that he was being weaned
off the respirator at that same time, so he kept “fighting the dizzies” during physical therapy. The
physical therapists actually took the patients on outings in order to help them adjust to their injuries.
Steven recollected his first outing to a grocery store and stated that it was “quite shocking” because
“all of a sudden you are placed in a world where people are staring at you.” During his 6 months in
the rehabilitation center, Steven stated that the physical therapists were instrumental with helping
him regain his strength, specifically in his arms and hands. Today, Steven does have some partial
function in both arms and hands, and he is constantly reminded of the hard work and determination put forth by his physical therapists.
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Counseling
According to Steven, counselors were used extensively during rehabilitation to focus on psychosocial
health. Steven stated that he had no job experience or college education, in which he recruited the
support of career counselors at Shepherd Center. Steven’s only previous work experience involved
manual labor, previously being a head cook at a local restaurant. The career counselors evaluated
Steven extensively and conducted specialized testing, after which Steven was then referred to a
center that helps disabled people find employment. Steven stated that he was very grateful for this
organization because they helped him find his very first job, which was working on special projects for a major company. From there, Steven was very determined to use his mind instead of his
body to advance his career. Fast-forward 37 years later: Steven is now the chief executive officer of
a very successful cybersecurity company.
Social Support
Steven mentioned two influential people who played important roles throughout his SCI recovery: his father and a sales manager. After the researchers analyzed the interviews, the researchers
further divided social support into two subconcepts: personal and professional support systems.
Personal Support Systems. Although Steven was raised by his mother, Steven’s father was the
most influential personal support system immediately following his SCI. Steven stated, “I didn’t
know my father very well growing up as a kid. I only saw him occasionally due to my parents’
divorce. However, after my injury, my father flew out to San Diego and stayed with me for the first
2 weeks, before flying me back to Atlanta, Georgia, to be near him. My father modified his entire
house in order to accommodate my wheelchair.” Steven further explained that his father did not
show him pity and “pushed him to his limits” in order for Steven to start caring for himself. Steven
recalled one moment while staying at his father’s house, where his father threw Steven’s pants at
him and said, “Put these on yourself!” Steven stated he was shocked and a bit angry; however he
proceeded to put his pants on by himself. “I was excited that I could put my pants on by myself,
even if it took me 3 hours, at least I knew I could do it!”
Professional Support Systems. After Steven worked on many special projects, he realized that
this job was not the right fit owing to the intense manual labor. The volunteers helped Steven with
his résumé and ultimately found him a job at a new start-up phone company. Steven stated, “I got
real lucky with this job because it was a fantastic place to work for the next 15 years.” Steven stated
that the most influential professional support system was his sales manager at the time of his employment. “He was a huge influence in my life because not only did he teach me about business, but he
taught me to do whatever it takes if you want something bad enough.” These words resonated with
Steven for years and eventually pushed him to start his own company, which is flourishing today.
Spirituality
Prior to Steven’s SCI, Steven thought his life would be complete after moving to California. However, Steven stated, “There was still something missing in my life.” One day, a waitress invited
Steven to come to church on a Friday night. Steven thought to himself, “Are you kidding me? Church
on a Friday night? I would rather go to a party!” Steven decided to be polite and attend church, in
which Steven described this experience as a “life-changing event.” This single church service had a
Discussion
169
“profound impact” and “changed my life in so many great ways.” Fast-forward to Steven’s SCI. Steven
stated that if he had not gone to church that night, he does not think he would be the type of person who would be able to accept the challenges associated with being a quadriplegic. “Was I happy
to be paralyzed in a wheelchair? No. But I was able to cope with it through my religion.” Steven
explained to the researchers that he lives by the 10 Commandments in order to guide what is right
and wrong. Steven explains, “To this day, I still thank God every day for the blessings given to me.”
Results Related to Theory
Haase and Phillips (2017) stated that patients who have overcome obstacles, such as traumatic SCIs,
have achieved resilience, which is defined as a positive adjustment when an individual is facing
adversity. Many times, adversity is associated with adjustment difficulties. The theory of resilience
explains interventions that lead individuals into positive adjustments after their traumatic event
(Haase & Phillips, 2017). SCI patients must be able to positively adjust to their injury in order to
achieve a stable and healthy level of psychological and social functioning; otherwise they may have
difficulty coping with life challenges (Kilic et al., 2013).
Three classes of protective factors that are hypothesized to positively affect resilience outcomes
include individual, family, and social protective factors (Haase & Phillips, 2017). Steven addressed all
of these protective factors throughout his interviews. Steven’s individual protective factors include
maintaining a positive attitude, acting as a role model, and having his faith. Steven’s family protective
factor mainly consisted of his father, who played an important role in Steven achieving resilience.
For Steven, social protective factors did not only come from family, coworkers, and healthcare providers but also from the rehabilitation staff and acting as a peer mentor (Haase & Phillips, 2017).
▸
Discussion
Conclusions
Regardless of the patient’s age at onset, patients with SCIs have the potential to improve their overall
quality of life using components of resilience theory, as previously discussed (Sakakibara et al., 2012).
Throughout this qualitative research, Steven’s SCI revealed major concepts and subconcepts, which
contributed to a positive life adjustment, eventually achieving resilience. Even though Steven’s story
today appears bright, Steven utilized the concepts of resilience, rehabilitation, social support, and
spirituality to ultimately achieve his success. Because Steven was able to utilize these concepts, Steven is currently flourishing as the chief executive officer of his own cybersecurity company. These
research findings display an excellent portrayal of a person being able to live a life beyond movement.
Implications
NPs should consider positive predictive factors while providing care to SCI patients in order to
assess their ability to achieve resilience throughout their recovery (Kilic et al., 2013). As healthcare providers, it is important to offer coping strategies to help newly diagnosed SCI patients overcome their obstacles. There is an increased prevalence of NPs in rehabilitation environments either
as independent or collaborative providers (Kosevich et al., 2014). This topic is significant to NP
practice because NPs will diagnose and treat patients who have suffered SCIs. NPs, in coordination with psychiatrists, manage the ongoing care of SCI patients, which includes ensuring that SCI
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Chapter 14 Life Beyond Movement: A Life History of a Male Quadriplegic
patients have the appropriate education, training, and rehabilitation services. Also, NPs help with
coordination to ensure that patients have access to necessary medical equipment in order to optimize their functional status. If NPs are not properly educated and trained about the specific care
that SCI patients require, then they will not be able to provide accurate education or treatment for
these patients’ unique needs (Kosevich et al., 2014).
Recommendations
The researchers recommend a psychometric instrument study in order to convert this qualitative
research into a quantitative study. A quantitative study in which researchers might have the opportunity to interview more participants may reveal the gap in the literature regarding the lack of
SCI education.
References
Guzelkucuk, U., Kesikburun, S., Demir, Y., Aras, B., Ozyoruk, E., Yilmaz, B., & Tan, A. K. (2015). Demographic and clinical
characteristics of patients with traumatic cervical spinal cord injury: A Turkish hospital-based study. Spinal Cord,
53(6), 441–445.
Haase, J. E., & Phillips, C. R. (2017). Resilience. In S. J. Peterson & T. S. Bredow (Eds.), Middle range theories: Application to
nursing research and practice (pp. 259–278). Philadelphia, PA: Wolters Kluwer Health/ Lippincott Williams & Wilkins.
Kilic, S. A., Dorstyn, D. S., & Guiver, N. G. (2013). Examining factors that contribute to the process of resilience following
spinal cord injury. Spinal Cord, 51(7), 553–557.
Kosevich, G., Leinfelder, A., Sandin, K. J., Swift, E., Taber, S., Weber, R., & Finkelstein, M. (2014). Nurse practitioners in
medical rehabilitation settings: A description of practice roles and patterns. Journal of the American Association of Nurse
Practitioners, 26(4), 194–201.
Monden, K. R., Trost, Z., Catalano, D., Garner, A. N., Symcox, J., Driver, S., . . . Warren, A. M. (2014). Resilience following
spinal cord injury: A phenomenological view. Spinal Cord, 52(3), 197–201.
Nas, K., Yazmalar, L., Sah, V., Aydin, A., & Ones, K. (2015). Rehabilitation of spinal cord injuries. World Journal of
Orthopedics, 6(1), 8–16.
Sakakibara, B. M., Hitzig, S. L., Miller, W. C., Eng, J. J., & SCIRE Research Team. (2012). An evidence-based review on the
influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord, 50, 570–578.
Thompson, C., Mutch, J., Parent, S., & Mac-Thiong, J. M. (2015). The changing demographics of traumatic spinal cord
injury: An 11-year study of 831 patients. The Journal of Spinal Cord Medicine, 38(2), 214–223.
CHAPTER 15
Overcoming Breastfeeding
Challenges: A Case Study
Lauren Sillery Oberg
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the state of the literature on breastfeeding.
2. Compare and contrast the importance of breastfeeding.
3. Describe one woman’s experience of breastfeeding.
▸
Introduction
Breastmilk has been overwhelmingly demonstrated to have numerous health advantages for
newborns and breastfeeding mothers (American Academy of Pediatrics [AAP], 2012). From a
pediatric standpoint, breastfeeding has been associated with decreases in chronic illnesses, acute
illnesses, and obesity in children (AAP, 2012). From a maternal health standpoint, breastfeeding
has positive effects on diabetes, weight loss, and postpartum depression, and can greatly improve
overall health outcomes for postpartum women. In terms of public health, the positive health effects
associated with breastfeeding help reduce burdens placed on the health system and reduce financial
constraints for communities, employers, and families, such as fewer sick days used, less consumption of health resources, less reliance on expensive formula. (AAP, 2012; Kendall-Tackett, 2015).
Given the advantages of breastfeeding, public health professionals and healthcare providers
have been increasing their promotion of breastfeeding in the United States. Professional organizations such as the AAP now recommend exclusive breastfeeding for infants for the first 6 months
of life, and breastfeeding with supplementation of other foods for one full year (AAP, 2012). However, while breastfeeding initiation rates in the United States have increased substantially over the
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
years, the rate of infants continuing to receive breast milk at 6 months and 1 year are dramatically
short of the recommendations. As of 2011, 79 percent of newborns began breastfeeding, but only
49 percent were breastfeeding at 6 months, and only 27 percent were breastfeeding at 12 months
(National Center for Chronic Disease Prevention and Health Promotion [NCCDPHP], 2014).
Numerous challenges exist that make mothers consider terminating breastfeeding prior to the
1-year mark, ranging from physical concerns like sore breasts or inadequate milk supply, to broader
issues like lack of family support and difficulty in returning to work (Brand, Kothari, & Stark, 2011;
Lessen, 2012). Despite the presence of these and other concerns, some mothers are able to overcome
their obstacles, maintaining breastfeeding in the face of challenges. The research in this proposal
will examine this situation with the following question: What challenges do breastfeeding mothers in a community setting face, and what resources do these mothers use to overcome these challenges and continue to successfully breastfeed? This question will be explored via a case study of a
breastfeeding mother; specifically, a woman who experienced significant challenges while breastfeeding her infant but was able to adequately address these challenges to continue to breastfeed.
Purpose
The purpose of the case study is to describe one woman’s experience in breastfeeding.
Rationale
The rationale for conducting this study is to provide a greater understanding of the challenges faced
by breastfeeding mothers, with specific attention to how these challenges might be successfully
addressed. While this case study will only closely examine one woman’s experience, the ultimate
goal in expanding the knowledge on this topic would be, based on the preliminary findings of this
and other studies, to research and develop targeted community strategies to successfully support
the needs of breastfeeding mothers. The aim in developing these community programs would be to
improve overall breastfeeding rates for infants in the United States, especially length of breastfeeding duration, thus allowing mothers and infants to experience the full positive impact that breastfeeding can have on their lives and their health.
Definitions
While operational definitions are not appropriate for case study research, it is important to establish some conceptual definitions relevant to the project. For the purposes of this study, a breastfeeding mother is defined as any mother who was/is providing her own breastmilk as a source of
nutrition for her infant, whether via direct infant feedings at the breast or via feeding of expressed
milk with a bottle. It is not required for breastmilk to be the exclusive source of infant nutrition.
A challenge to breastfeeding constitutes any experience (ranging from physical, psychological,
emotional, and so on) that increases the difficulty of providing the infant with breastmilk.
A resource is any means of support (again, whether physical, psychological, emotional, and so
on) that results in positive reinforcement of breastfeeding.
Importance to the Field of Study
This research is relevant to the areas of women’s health and pediatrics, in that the results could potentially be used to further research on interventions to support breastfeeding duration. In looking at
The Literature
173
the personal standpoint of someone who rose above challenges during her breastfeeding experience, the study can provide new avenues of investigation for how to enhance community-based
support for breastfeeding mothers and how to specifically address common breastfeeding problems. In doing so, it is hoped that it could extend the potential health benefits of breastfeeding to
more mothers, infants, and communities.
▸
The Literature
A systematic review of the recent literature on the topic of breastfeeding challenges was performed
prior to initiating the study. The tool used to perform the search was Kennesaw State University’s SuperSearch, which searches for findings within the Kennesaw State University library catalog, digital collections, archives and special collections, resources from the GALILEO search
engine, and numerous other electronic databases, such as JSTOR, ScienceDirect, and Academic
Search Complete. The researcher searched for the phrase breast feeding as a subject, with additional phrases of United States and challenges also included (these last two terms having no categories specified). The expanders of “Apply equivalent subjects” and “Also search within the full
text of the articles” were also applied. The search was limited to full-text articles in peer-reviewed
journals that were published between 2011 and 2016. This search yielded 469 potential articles
for review. First article titles, then abstracts, then finally articles were scanned and analyzed for
relevance to the research question. Only research studies that addressed breastfeeding challenges
in some form of an outpatient, community setting and that specifically addressed challenges of
breastfeeding were included in the literature review. This subsequent appraisal yielded 14 articles
that met the inclusion criteria.
After the research itself was completed, another search was done using the same criteria listed
previously, but only for the dates between April 2016 and November 2016, to identify any articles
published on this topic since the initial project proposal. This search yielded 21 articles, of which
only 2 met the inclusion criteria for this study. These new findings did not introduce any new themes
but have been included in the discussion that follows.
Themes
Overall, the literature review yielded several key themes.
Theme 1: The Rise of Digital or Online Forms of Support
Overall, the research finds that digital means of support are becoming a more common form of
support. West et al. (2011) set out to review the information and/or support offered by breastfeeding blogs. Their findings showed that a majority of the blogs posted about breastfeeding behavior,
and a minority existed to give social support or share experiences. However, those blogs that shared
experiences and gave social support brought quicker responses and had more behavior-change cues
coded in their responses than did blogs that focused merely on behavior.
Asiodu, Waters, Dailey, Lee, and Lyndon (2014) looked more generally at how social and digital
media were used during the antepartum and postpartum period by performing a critical ethnography on pregnant African American women and some of their support persons. The researchers
found that, in general, social and digital media were frequently used for perinatal information, but
that information relating specifically to perinatal information about breastfeeding was rare. In the
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
postpartum period, some mothers did access breastfeeding websites after their child was born. They
reported that this helped to reduce their feelings of isolation and frustration, though they were dismayed that so many online breastfeeding resources lacked racial diversity.
Biediger-Friedman, Crixell, Silva, Markides, and Smith (2016) performed focus groups to
review needs and desires of the target audience in the design of a smartphone app for Women,
Infants, and Children (WIC) clients in Texas, an app being designed to promote numerous health
behaviors, including breastfeeding. The study revealed how much the participants valued the support they received from social media and other electronic sources, both in terms of having access
to correct and individualized information about breastfeeding and in terms of having encouragement for their choice, especially if their family or peers were unsupportive.
Theme 2: Influence of Healthcare Providers
The literature reflected the amount of both positive and negative influence that healthcare providers
can have on the outcomes of a breastfeeding mother. Smith, Coley, Labbok, Cupito, and Nwokah
(2012) took a phenomenological approach in their study of five breastfeeding teenaged mothers.
While the mothers cited numerous difficulties in maintaining breastfeeding for their infants, one
common problem was the lack of healthcare support for breastfeeding, particularly regarding early
introduction of formula and mixed messages about breast feeding versus formula feeding.
Cross-Barnet, Augustyn, Gross, Resnik, and Paige (2012) reviewed mothers’ experiences with
professional breastfeeding support—from their obstetricians, hospital staff during delivery, and
their infants’ pediatricians. Women consistently felt that their concerns regarding breastfeeding
were not appropriately addressed by their caregivers, or that their decision to breastfeed was not
well supported. The authors emphasized that for breastfeeding support to be effective, it must be
offered on a regular basis during the antepartum and postpartum period, and must contain consistent and accurate information for mothers.
In one of the few randomized, controlled trials that was included in this review, Bonuck et al.
(2014) assessed the effects on breastfeeding outcomes of in-depth prenatal discussion of breastfeeding from obstetric providers, paired with comprehensive prenatal and postpartum lactation consultant support. The influence on breastfeeding was significant, showing an up to threefold increase
in breastfeeding initiation and duration in the experimental groups.
Chen, Johnson, and Rosenthal (2012) reviewed not just general breastfeeding education from
medical providers but also specifically included information regarding education about breast pump
use. Their findings showed that education regarding breast pump use from medical providers was
associated with decreased breastfeeding longevity, whereas breast pump education from family
members and friends was associated with longer periods of breastfeeding duration. This can indicate a need to improve healthcare providers’ delivery of breast pump and breastfeeding education
and/or a need to direct breastfeeding mothers to more community-based or personal resources.
Theme 3: Importance of Prenatal Exposure to Breastfeeding
Education
Although the focus of this research question was on addressing postpartum breastfeeding challenges, many research articles included in this review also included an element of antepartum
breastfeeding education and support. Overall, the studies support the profound effect that antepartum interventions can have on preventing postpartum breastfeeding challenges in the first place.
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175
For instance, Metallinos-Katsaras, Brown, and Colchamiro (2015) found in their longitudinal
retrospective study of mothers in the Massachusetts WIC program that mothers who entered
WIC prenatally were more likely to initiate breastfeeding and were more likely to have longer periods of breastfeeding duration than those women who entered WIC after delivery of their baby.
The authors suggested that this longer exposure helped give breastfeeding mothers education and
support needed to successfully initiate and prolong breastfeeding.
Areas of Agreement and Disagreement
One area of agreement in the literature was in the common barriers that mothers encountered during
their breastfeeding experience. Studies, as a whole, reported that common challenges that led to
breastfeeding cessation were lack of social support from family or partners, perceived or actual poor
milk supply, perceived infant preference for formula, sore breasts or nipples, increased stress, difficulty returning to work or school, a lack of knowledge related to breastfeeding, and a lack of healthcare support (Brand et al., 2011; Chen et al., 2012; Cross-Barnet et al., 2012; Dunn, Kalich, Henning,
& Fedrizzi, 2015; Kadakia, Joyer, Tender, Oden, & Moon, 2015; Martino, Wagner, Froh, Hanlon, &
Spatz, 2015; Smith et al., 2012; Wambach, Domlan, Page-Goertz, Wurtz, & Hoffman, 2016).
While factors that contributed to improved breastfeeding rates and duration were not as commonly studied as factors that contributed to breastfeeding cessation, authors agreed that factors that
aided in breastfeeding were improved familial or social support and maternal self-efficacy (Chen
et al., 2012; Dunn et al., 2015; Negin, Coffman, Vizintin, & Raynes-Greenow, 2016; Wambach
et al., 2016.)
Areas of disagreement mainly involved the use of interventions to improve breastfeeding.
Various suggestions were found throughout the literature, including interventions by lactation
consultants (Bonuck et al., 2014), enhancement to the education healthcare providers themselves
receive in regard to breastfeeding (Chen et al., 2012), use of breastfeeding logs (Pollard, 2011),
increased use of social media forms of support (Asiodu et al., 2014; West et al., 2011), and delaying the return to work until a normalized mother-baby routine had been established (Froehlich
et al., 2015). None of these interventions were, on their own, considered to be completely unhelpful, but there was disagreement as to which would provide the most benefit and which should be
the area of most focus.
State of the Art in the Literature
One strength of the literature was that research has produced a thorough appraisal of the common
difficulties faced by breastfeeding mothers. The literature also provided a good focus on the point
of view of the breastfeeding mothers themselves, as opposed to medical professionals in the field.
Eleven of the sixteen studies included in the review included some qualitative aspect (whether
they were strictly qualitative or included some sort of mixed methodology), allowing researchers
to gain insight into the experience and perspective of the group under study and to provide baseline data for future study.
Gaps in the literature, however, include a lack of focus on specific interventions to overcome
barriers. While barriers were identified readily enough, the research did not address what interventions breastfeeding mothers could then take to overcome specific problems. As evidence of this situation, the literature also has a lack of quantitative data to support specific measures—only two of
the studies were randomized, controlled trials that showed the direct effects of specific interventions.
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
While the study under proposal is also qualitative in design, it would help address gaps in
the research with its focus on resources and interventions used to overcome specific breastfeeding concerns of a particular mother. Ideally, this data will help target future research on successful
community breastfeeding interventions.
▸
Methods
Design
This research was a qualitative study, comprising a case study conducted via semistructured interview.
Sample
The desired sample for the study was one woman in the northern Atlanta/Alpharetta area who had
breastfed or was currently breastfeeding her infant(s). Specifically, the desired participant would
have faced significant challenges during her breastfeeding experience, but she would have continued to breastfeed her infant in the face of these challenges.
The researcher posted to a Facebook page for a group called “Alpha Mamas,” an online group
created to provide online parenting support for mothers in the Alpharetta/Northern Roswell area
of Georgia. Within 24 hours, 4 of the group’s 119 members had responded to express interest in
participating in the study. Further selection of a study participant was based on potential participants’
availability, proximity, length of total time spent breastfeeding, and how recently the participants’
breastfeeding experience had occurred. Also, since the aim of the research was to assess barriers
to breastfeeding and how those barriers can be overcome, preference was given to those interested
individuals who underwent an unusual number of challenges or problems during breastfeeding.
From these four interested respondents, one participant was chosen for the sample—Elizabeth
(a pseudonym used to maintain privacy), a woman who had breastfed both of her children (and
was, in fact, still nursing her youngest son), lived locally, had flexible availability, and had journeyed
through a markedly turbulent breastfeeding experience.
Procedures were put in place to protect the rights and privacy of the participant and IRB
approval was obtained.
Setting
The interview occurred at the home of one of the participant’s close friends. The friend watched
the participant’s two children downstairs while the interview was recorded in a quiet, comfortable,
private study upstairs.
Instrument and Data
The study was completed using a semistructured interview, composed of the following questions:
1.
2.
3.
4.
5.
Tell me a little about yourself and your child(ren).
When and how did you make the decision to breastfeed?
What were your goals for breastfeeding?
What were the biggest barriers or challenges that you faced during breastfeeding?
What did you do to overcome those barriers?
Results
6.
7.
177
What did you see as your greatest sources of support for breastfeeding?
What could have made your breastfeeding experience better for you and your
child(ren)?
Additional follow-up questions were added, as needed, based on the participant’s responses.
The digital recording of the interview was transcribed by the study’s author to create a verbatim written record of the interview. Afterward, the responses to the interview questions were analyzed via content analysis. Sections of the transcript that correspond to the aim of the study were
underlined and coded. These final coded sections of the transcript were then reviewed and analyzed for emerging themes and subthemes.
Rigor
Houghton, Casey, Shaw, and Murphy (2013) suggest several methods to increase reliability and validity in case study research. One such method is to ensure a sufficiently prolonged interview time, to
allow a thorough and complete enough discussion that no new themes or emerging data would be
forthcoming, even given more time. To achieve this goal, the author asked broad initial questions,
asked appropriate follow-up questions, and allowed the participant adequate time to fully answer
all inquiries to allow for data saturation.
Another way to increase the reliability and validity of the study involves member checking. In
this case, Elizabeth was emailed a copy of the full transcript of the interview, which she agreed had
been transcribed accurately and appropriately.
Procedure
The interview took place and was recorded in a study upstairs, while the friend watched Elizabeth’s
two children for the duration of the interview. This setting allowed for privacy, convenience, and comfort. Having a trusted babysitter allowed for the interview to be conducted without childcare-related
interruptions.
Following the recording session, the author created a complete written transcript of the interview. A copy of the transcript was sent to Elizabeth for review, and she attested that, from her perspective, the interview had been accurately transcribed. A thorough review and content analysis
then followed, with one follow-up email sent to the participant for clarification on some small
points. Prominent sections of the interview were underlined and analyzed until dominant themes
emerged from the interview data.
▸
Results
Participant
The participant in this case study was Elizabeth, a 34-year-old Caucasian woman from Georgia.
She graduated with a bachelor’s degree, as well as a child development associate (CDA) degree. She
was married, and she had two sons, a 3-year-old and an 11-month-old. She breastfed her first son
until he was 26 months old, and she was still currently breastfeeding her youngest son. After having her children, she stayed at home to care for her children, but prior to that, she worked as the
head of warranty and an assistant to the CFO for a manufacturing company, and following that,
she worked as a preschool teacher.
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
The concepts that emerged from the interview fell into two broad categories: barriers to breastfeeding and factors that helped to overcome these barriers.
Barriers to Breastfeeding
Physical Barriers
One major obstacle that Elizabeth had to contend with was the issue of physical barriers to breastfeeding. In Elizabeth’s case, these broke down further into maternal factors and infant-related factors.
Maternal Factors. Elizabeth endured several physical conditions related to breastfeeding, the most
prominent of which was breast and nipple pain. She described the first 4 months of breastfeeding
her eldest son as “constant, excruciating pain.”
One major factor contributing to this pain was vasospasm in her breasts. Elizabeth described
that, after breastfeeding her eldest son, her “whole nipple would be white . . . and then, like, a minute later, the blood would come back, so it would get red again, but it would hurt so bad when the
blood went back. Like someone had just slammed the door on [my] nipple, every time after he’d
feed.” In addition, Elizabeth experienced repeated cases of thrush, a Candida albicans infection
of the breast that characteristically causes stabbing, severe pain (Pessel & Tsai, 2013). The thrush
infections were exacerbated by Elizabeth’s tendency toward engorgement of the breasts, caused by
an overabundant supply of breast milk. The oversupply of milk was in and of itself painful, due to
increased breast swelling; but the increased levels of breastmilk provided an optimal environment
for growth of the Candida organism, which in turn contributed to Elizabeth having yet more cases
of thrush. Finally, Elizabeth experienced nipple tenderness simply related to poor latching of the
infant to the breast. Nipple pain is a common and undertreated problem in breastfeeding women,
in general; it is a frequently cited reason for early breastfeeding cessation (McClellan et al., 2012),
although Elizabeth was later able to overcome the pain in this case.
Another physical barrier that affected Elizabeth was exhaustion. Her first son, in particular,
nursed every 2½ hours “night and day” until he was 2 years old. The same child would frequently
be awake from midnight to 3 a.m., “no matter what,” in the first year of his childhood. The effect
of constantly feeling tired decreased her sense of physical well-being and made her feel unable to
function as well during the day.
Infant-Related Factors. Elizabeth’s children also had factors that made breastfeeding difficult.
Her second child was born 4 weeks before his due date. Preterm infants are more likely to have
difficulties with breastfeeding, such as increased lethargy and inefficient sucking (Mulready-Ward &
Sackoff, 2013). As may then be expected, Elizabeth’s youngest was not vigorously active at the breast,
which impacted her milk supply. Elizabeth stated that her milk “wouldn’t come in, since he was so
early, so we had to . . . feed him, then pump, then supplement after every feeding for 2 weeks. So
that was really hard.”
The same infant also had a labial frenulum, or lip tie. Research has demonstrated that infants
with a superior labial frenulum have difficulty flanging the upper lip properly while nursing, leading to poor latch and nipple pain (Kotlow, 2013)—precisely what came to pass with Elizabeth.
Lack of Breastfeeding Knowledge
The second main barrier from Elizabeth’s narrative was a lack of breastfeeding knowledge, encompassing both Elizabeth’s and her medical providers’ lack of information.
Results
179
Elizabeth’s Lack of Knowledge. Elizabeth had taken a lactation class prior to delivering her first
son, which made her feel empowered and prepared to breastfeed. But she reported, “Then the baby
came out, and I was like, I have no idea what [the instructor] told me!” Taking the information she
had learned and putting it into practice at the actual time of delivery was a problematic transition.
Also, the class did not cover all the difficulties she eventually ran into—for example, Elizabeth
“thought it was supposed to hurt that bad every time you fed.” She had no way to tell a normal
breastfeeding experience from an abnormal one. Smith et al. (2012) mention this problem in their
study, as well—that frequently, prenatal breastfeeding education does not teach adequately about
the challenges of breastfeeding and the skills to use in the face of these challenges.
Healthcare Providers’ Lack of Knowledge. Elizabeth’s healthcare providers were also not fully
prepared to respond to her physical breastfeeding challenges. When Elizabeth approached her providers with problems, they often did not react aggressively or seriously to her concerns. She said,
“When I called the OB . . . they were very relaxed about it. But, like, it’s a big deal when it’s three
in the morning and your baby wants to eat and you’re in pain. You kind of need a little bit more
addressed.” Regarding her vasospasm, Elizabeth’s providers did not know at all what her condition
was and were unable to properly diagnose her. Only after Elizabeth did extensive research on her
own and brought the research (including recommended treatment) to her provider did she receive
the care needed to overcome the problem. Inconsistency of medical advice was also a problem.
Elizabeth reported that, when she and some other mothers were discussing a breastfeeding issue,
each woman reported what their pediatrician had recommended, and each woman had received
completely different advice. Cross-Barnett et al. (2012) discuss that inconsistent information from
medical providers, such as the example here, is an issue that frustrates many women and motivates
them to discontinue breastfeeding.
Social Stigma
A final concept that emerged as a breastfeeding challenge was encountering the social stigma
associated with breastfeeding, particularly out in public. While Elizabeth was eventually able to
transition into breastfeeding comfortably in public spaces, at first, she felt “super shy,” because “you
don’t see so many women breastfeeding.” She would arrange her day so that she could be home in
time for feedings, to avoid this discomfort. At first, too, she had to navigate friends and family members who were uncomfortable with breastfeeding. Elizabeth explained how her father had an issue
with it, “Even if I have a cover and you can’t see anything, he’s still like, I’ll wait in the other room!”
She reported that, while some bystanders were very kind and supportive of breastfeeding in public,
she did experience “dirty looks” and “stares” that she had to get accustomed to. She also shared one
story of a mall employee who approached her and told her to cover up when she was breastfeeding
her son in public. This attitude is not unusual, and a community perception of distaste for public
breastfeeding has been documented in the research literature (Mulready-Ward & Hackett, 2014).
Methods of Overcoming Barriers
There were four main concepts that emerged as a means of overcoming the hardships of breastfeeding.
Education and Expert Advice
While she acknowledged the limitations in some of her providers’ breastfeeding knowledge, Elizabeth
still found the advice and education she received from medical providers very useful overall. She
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
particularly praised the nurse practitioner at her OB/GYN office, who was very well versed in breastfeeding support. She also enjoyed the antepartum and postpartum support given by lactation consultants associated with her local hospital. Finally, she also relied on Internet resources, particularly the
website of Dr. Jack Newman, a Canadian physician and breastfeeding authority, which allowed her
to find the resources she needed to identify and treat her vasospasm (Newman & Kernerman, 2009).
Medical Interventions
Several medical interventions allowed Elizabeth some relief from breastfeeding challenges.
A chief intervention included medications of various sorts—diflucan and other antifungals for
the treatment of thrush; nifedipine, a calcium channel blocker, for successful treatment of vasospasm
(she took the medication for 2 months, then weaned off it with no resurgence in symptoms), and a
medication called “triple nipple cream,” a compounded mix of a topical antibiotic, antifungal, and
corticosteroid, for nipple pain. Elizabeth described this last medication, in particular, as being “from
heaven,” and found it very effective at treating nipple pain (although Elizabeth described some difficulty in getting the medication, both due to trouble finding a compounding pharmacy and due to
her provider’s reluctance to give a prescription). Though evidence suggests that providers should
use caution and thorough examination to ensure an accurate diagnosis prior to writing prescriptions, these treatments are supported by research as helpful in treating nipple pain and infection
and, thus, in promoting prolonged breastfeeding (Kent et al., 2015).
Other interventions initiated by medical providers included the frenulotomy done by Elizabeth’s pediatrician to clip her youngest son’s lip tie to improve his latch, and the initiation of pumping to help establish milk supply and to help in the treatment of engorgement.
Community Support
Another theme in overcoming breastfeeding challenges was the support Elizabeth received from
various places in her community. Without these examples of support, Elizabeth stated that “I don’t
think I would have made it those first few months.” She went into detail about the support she
received from the individuals in her life, from her husband helping her hold her breast to latch the
baby after her C-section and getting up to wash pump parts at night, to family members helping
to plan activities around the times her children had to nurse, to friends who encouraged her and
made her feel more comfortable about breastfeeding in public.
In addition to friends and family, Elizabeth attended a free-of-charge weekly breastfeeding support group run by the local hospital. A lactation consultant attended every meeting and helped lead
discussions about breastfeeding among the women in attendance. Elizabeth found this experience
invaluable, since “you’re like, I must be doing something wrong, everybody else makes it look so
easy,” but hearing other mothers recount their stories helped normalize her experience and gave
her new ideas and solutions to problems she was having. These examples of support, from family
and friends and peers, are in keeping with the research, which shows that a positive support system contributes to longer breastfeeding times (Chen et al., 2012; Reeder, Joyce, Sibley, Arnold, &
Attindag, 2014; Wambach et al., 2016).
This group also created a Facebook page to provide additional support for its members. Members could post questions, or articles regarding breastfeeding or parenting, or helpful tips for other
mothers to review. This forum was particularly helpful to Elizabeth as a new mother, since “if at
3 am you’re having problems, usually there’s someone else who’s awake, so . . . it’s like a target audience that’s with you.” Emerging research into breastfeeding support has begun investigating methods
Discussion
181
similar to this group, such as blogs or other social media platforms, to see how new approaches
to breastfeeding support can increase access to information and be more convenient for nursing
mothers (Asiodu et al., 2015; Biediger-Friedman et al., 2016).
Self-Efficacy
A final theme that emerged as a way of overcoming breastfeeding challenges was self-efficacy. Dunn
et al. (2015) found that maternal confidence and knowledge of the importance of breastfeeding have
a positive impact on breastfeeding success, and these factors (particularly level of confidence) were
very present with Elizabeth, leading her to believe that she had control over her role as a breastfeeding mother. Elizabeth described how her “parent confidence” grew as she had more and more
practice with parenting, in general, and breastfeeding, in particular. This was particularly evident
in her comfort level at breastfeeding in public. Elizabeth mentioned how “my husband laughs at . . .
when I went to Mardi Gras, I would never flash anyone, and now I’m like, flashing anyone when
I feed Aaron anywhere, like, I don’t even care. Stuff like that, you just need to move past it, I think.”
She also talked about how she would reframe her experience to try to make challenges more
manageable. She discussed how, for her first son, her original goal was to breastfeed for a year. However, after actually starting to breastfeed, “everything went wrong. So our new goal was just ‘make
it through the day.’ [laughs] Just make it through today! And then maybe we’ll stop tomorrow!”
Breaking her goal down into smaller, manageable increments, and realizing that she had the control
over starting and stopping breastfeeding as she chose, helped make the barriers surmountable.
Elizabeth was also unafraid to advocate for herself and her children when it came to breastfeeding.
Whether this took the form of doing her own research to find the cause of her nipple pain, to actively
standing up to people who glared at her or, in one case, even told her to cover up while she was nursing
in public, Elizabeth felt that she had the power and ability to overcome challenges to achieve her goal.
▸
Discussion
Theoretical Implications
Elizabeth’s experiences in overcoming the challenges of her breastfeeding experience are well supported by social support theory. This theory, championed early on by John Cassel and expanded in
subsequent decades, describes ways in which social relationships—for example, those found within
families or community groups—enhance health promotion behaviors and positive health outcomes
on an individual level (Cassel, 1976; Schaffer, 2013). This effect can be due to the “buffer effect,”
wherein social relationships shelter an individual from negative outcomes during a time of stress,
such as childbirth and parenthood (Schaffer, 2013). Elizabeth directly attributed her success with
breastfeeding to her support from family, friends, peers, and professionals in her life, stating she
would not have overcome the hardships of her first few months without these beneficial relationships. This case study reveals the many forms that positive social support can take—professional
(from healthcare providers of various levels) versus laymen (from other mothers), formal (from
breastfeeding classes) to informal (online discussions on Facebook), positive (support for breastfeeding) versus negative (disapproval of public breastfeeding). Elizabeth’s use of the Facebook support group in this study supports the recent forays of social support theorists into the potential
for electronic and digital forms of support, expanding the idea of a supportive community beyond
what is merely physically proximate to an individual.
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
Conclusions
The barriers to breastfeeding encountered in this study are fairly in keeping with the main barriers found in previous research. Pain and other physical issues were primary problems (although
the presence of vasospasm was fairly unusual), followed by a lack of knowledge about breastfeeding, both for the new mother and for the medical provider, and the social stigma associated with
breastfeeding.
In terms of education and breastfeeding knowledge, Elizabeth’s experience highlighted how
knowing about how breastfeeding is supposed to work (when it goes right) is not the same as identifying and adequately responding to breastfeeding problems. Elizabeth took classes on breastfeeding,
and her providers were supportive of her attempts and had some basic breastfeeding knowledge, but
nobody had taught Elizabeth how to recognize problems. Providers tended to minimize the problems when they were brought to their attention and did not treat them as accurately, promptly, or
thoroughly as was needed. This is unfortunate, as some of Elizabeth’s solutions to her breastfeeding problems were medical in nature—medications that helped with pain or infection, pumping of
breast milk to help with engorgement and decrease thrush, or procedures to fix a lingual frenulum.
Medical providers thus have a great potential to give relief to breastfeeding patients who are having problems, but they will not be able to realize this potential if they are not taking their patients
seriously or correctly recognizing problems when they occur.
Elizabeth found various forms of education to be helpful in overcoming barriers to breastfeeding, but she acknowledged that this education was somewhat flawed. Much of her education
came after the fact, when she had already developed problems, when it would have been more valuable for her if it came before the problem developed in the first place. Also, some of her education
and advice from experts came from her own requests for information or her own private research
online—it was something she had to actively seek out and acquire on her own, and was not easily
or readily available to her from standard medical sources.
This leads to the question of self-efficacy. This theme from the study is again consistent with
previous research showing that higher self-efficacy rates in women lead to higher breastfeeding rates.
Elizabeth’s dedication to breastfeeding involved strength to overcome excruciating pain, advocacy
for herself and her children, and independent research to achieve her goal. All of this was rooted
in a belief that she could act to force a positive outcome, that she could help turn a negative into a
positive, and that she could successfully tackle problems. Personal dedication and empowerment
was a major player in her success.
The use of social support to overcome challenges was instrumental in Elizabeth’s success as
well. Elizabeth’s experience demonstrates how support from many different quarters can come
together to create a supportive environment for breastfeeding. For example, she had medical professionals to go to for advice and treatment when needed, and a pediatrician who enthusiastically
supported her decision to breastfeed. She had a different sort of support from her family. While
they were not able to offer technical support, in terms of advice on how to latch the baby or what
medications to take for nipple pain, they planned around and normalized her breastfeeding, helping to increase her comfort and confidence in her decision and helping her overcome her misgivings about breastfeeding in front of other people. They also would provide physical assistance, such
as washing pump parts or setting alarms, that helped her overcome exhaustion and focus on the
task of feeding her children. Finally, she had the support of peers—other mothers who were also
breastfeeding their babies at the same time as she was. Her attendance of a support group was especially important. From the women at the group, she received the empathy and support she needed
to power forward through difficult days, she received validation of her choice, she found helpful
Discussion
183
tips that she was unable to get from her physicians, and she received support in the transition into
motherhood. This case shows how social support involves many interconnected spheres that can
come together and provide different types of support to create a successful outcome.
A particularly notable form of support was the Facebook discussion forum that Elizabeth participated in. The flexibility of this medium—its ability to connect people at times of the morning
that most people would not be awake, for example—made social support more readily available, as
it was no longer constrained to a limited time and place.
Implications for Practice
The conclusions of this case study show some implications for advanced practice registered nurses
(APRNs). First, breastfeeding education and expert opinion were seen as useful tools, but they had
some serious shortcomings in the way they were currently being practiced. Thus, this is an area
where healthcare providers have great potential for improvement. Providers with patient populations that include breastfeeding mothers should encourage increased breastfeeding education prenatally. This education should not only include breastfeeding basics but also the signs of problems
and where patients can go for these problems. Patients should understand that there are treatments
for many of the difficulties with breastfeeding, and that they do not need to suffer in silence or give
up breastfeeding in the face of a correctable problem.
APRNs should also ensure that they are thoroughly educated with accurate, consistent information about breastfeeding and common challenges of nursing mothers so they can understand
and recognize breastfeeding problems when they occur. They should be aware of treatments available to address specific concerns of breastfeeding mothers, whether behavioral (such as pumping or
correcting a newborn’s latch) or medical (such as medications for vasospasm.) Additionally, APRNs
should remember how important breastfeeding is to their patients, in terms of physical, emotional,
and psychological health outcomes, and should strive not to treat breast pain as a normal part of
breastfeeding but as something worth investigating and treating, if needed.
The importance of social support was very strong in this case study. The implication for
APRNs in this regard has several parts: assessing the patient’s social support for breastfeeding prior to delivery, and helping the patient find ways to increase her support for breastfeeding (such as including family members in breastfeeding education, as advocated by Dunn et al.
[2015]); helping to encourage the formation of breastfeeding support groups in the patient’s local
communities; investigating the creation and development of digital forms of breastfeeding support; and assessing a patient’s needs and successfully directing her to resources available to her
in her community.
Because successful long-term breastfeeding is also associated with higher levels of maternal
self-efficacy, providers should also seek ways to increase self-efficacy in their patients. This is a
somewhat complicated task, but it is one way to encourage self-efficacy by emphasizing a mother’s
ability to control the potential pitfalls of breastfeeding and giving mothers a more explicit understanding of how breastfeeding works and what is and is not normal.
Recommendations for Future Research
The participant in this study leaned heavily on the support she received from other breastfeeding
mothers. Further research should be undertaken to delve into how to expand support such as this
to other mothers. Qualitative studies describing the creation of both in-person and online support
groups in various communities would be valuable, and quantitative studies examining the effects
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Chapter 15 Overcoming Breastfeeding Challenges: A Case Study
of these support groups on actual breastfeeding outcomes could help demonstrate whether these
groups are effective at improving the goal of increasing long-term breastfeeding rates.
An area of frustration in this case was also a lack of provider knowledge regarding certain
breastfeeding hardships, as well as a paucity of appropriate patient education from providers regarding possible breastfeeding complications. Studies that examine the effects of educating providers
on breastfeeding issues would be in order, as well as studies that review the effects of more thorough prenatal breastfeeding education (focusing on resources for when problems occur and how
to recognize problems) would help to evaluate the effect of improved patient education on breastfeeding outcomes.
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CHAPTER 16
Adult Family Relationships
After Childhood Maltreatment
and Parental Substance Use
or Mental Disorder: Pursuing
an Ethics of Care
Elise J. Matthews
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe potential concerns and psychosocial needs during the life transitions for adult men
and women who have experienced childhood maltreatment and adversity or growing up with
a parent with mental health and substance use disorders.
2. Identify factors that increase vulnerability and resilience for clients in your practice with similar
characteristics to the study sample.
3. Propose appropriate nursing interventions for this population through normal and disrupted
adult development.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 16 Adult Family Relationships After Childhood Maltreatment
Introduction
Prevalence of Childhood Maltreatment: Canada, United States, Global
Worldwide, 25 to 50 percent of children reported they have endured severe physical abuse, and
around 5 to 10 percent of men and 20 percent of women report a history of childhood sexual abuse
(Butchart, Harvey, Mian, Furniss, & Kahane, 2006). According to the Centers for Disease Control
and Prevention (CDC, 2010), in 2009, among 26,229 Americans 18 years of age or older from five
states, 59.4 percent reported at least one adverse childhood experience (ACE—verbal, physical, or
sexual abuse, and a family member with mental health or substance use disorder, domestic violence,
or parental absence from divorce or separation). In this sample, 8.7 percent reported five or more
ACEs, 29.1 percent reported household substance abuse, 19.4 percent reported a family member
with a mental disorder, 25.9 percent reported verbal abuse, 14.8 percent reported physical abuse,
12.2 percent reported sexual abuse, and 16.3 percent reported witnessing domestic abuse; notably, 17.2 percent of the women reported sexual abuse compared to 6.7 percent of the men (CDC,
2010). The U.S. Department of Health and Human Services (DHHS) (2017) reported that in 2015,
3,358,000 children in the United States required a response from child protective services, and
17.3 percent of those children were determined victims of childhood maltreatment. Among these
683,000 victims of child abuse (9.2 victims per 1,000 children nationally), 75.3 percent were neglected,
17.2 percent were physically abused, and 8.4 percent were sexually abused (DHHS, 2017).
In the context of the current study, the Canadian Community Health Survey: Mental Health
found that in 2012, among adult Canadians, 32 percent of Canadian adults reported that they had
experienced childhood maltreatment (physical abuse 26.1 percent, sexual abuse 10.1 percent, and
exposure to intimate partner violence 7.9 percent) (Jack, Munn, Cheng, & MacMillan, 2006). In the
largest Canadian province in the Ontario population (15 years and older), a survey indicated a history of physical abuse for 31.2 percent of men, 21.1 percent of women, and a history of childhood
sexual abuse for 12.8 percent of women and 4.3 percent of men; the proportion of men and women
reporting a history of physical or sexual abuse was 33 percent and 27 percent, respectively (MacMillan
et al., 1997). In 2014, 16,300 Canadian children under age 18 were victims of police-reported family
violence (i.e., physical, sexual, verbal, and financial victimization and neglect, with 56 percent of cases
being physical assault), and 61 percent of those young victims were hurt by a parent, and girls experienced this at a rate 1.5 times higher than boys (Statistics Canada, 2016). These Canadian incidence
rates of police-reported violence against children do not include calculations of exposure of children
to family violence; spousal violence accounted for 48 percent of family violence in 2014 (Statistics
Canada, 2016). The incidence of substantiated childhood maltreatment investigations in Canada in
2008 was 14.19 per 1,000 children (34 percent exposure to intimate partner violence; 34 percent neglect;
20 percent physical abuse; 9 percent emotional maltreatment; and 3 percent sexual abuse) with
similar rates for boys and girls, and in 18 percent of these cases more than one type of abuse occurred
(Trocmé et al., 2010). Given that a fraction of childhood maltreatment cases are reported—for example,
only 5 percent of Ontario adults reported they had had contact with child protective services—the
extent of the problem and the personal and social impact is likely underestimated (Fallon et al., 2010;
Jack et al., 2006; MacMillan, Jamieson, & Walsh, 2003; Statistics Canada, 2016; Butchart et al., 2006).
Adult Mental Health After Childhood Adversity
Childhood maltreatment is strongly associated with mental health disorders (Afifi et al., 2014). In a
Canadian sample, childhood physical abuse was associated with higher rates of anxiety, alcohol abuse,
Method
189
and antisocial behaviors among men, and childhood sexual abuse was associated with higher rates of
alcohol abuse among men (MacMillan et al., 2001). In a Swedish sample, exposure to intimate
partner violence in childhood was associated with a higher incidence of anxiety, depression,
post-traumatic stress, and attention-deficit/hyperactivity disorder (ADHD) compared to adults
without this history of adversity, and a positive relationship was found between severity of intimate
partner violence and higher levels of mental health problems (Cater, Miller, Howell, & GrahamBermann, 2015). In a sample from the United Kingdom of adults with severe mental illness,
63 percent of men and 71 percent of women reported a history of moderate to severe childhood
maltreatment—sexual abuse, physical and emotional abuse and neglect—(Anderson, Howard,
Dean, Moran, & Khalifeh, 2016). Several studies with American samples report similar findings.
For example, suicidal ideation, suicidal attempts, and psychiatric disorders have been associated
with a history of child abuse (physical and/or sexual abuse, neglect, and witnessing domestic violence) among men and women (Afifi, Boman, Fleisher, & Sareen, 2009). A history of childhood
psychological maltreatment among both male and female adults has been associated with higher
(clinically significant) levels of depression and anxiety (Chirichella-Besemer & Motta, 2010).
A history of childhood maltreatment (emotional and physical abuse and neglect, and sexual abuse)
in women was associated with adult psychopathology and relationship conflict, and a higher severity of such distress has been associated with a higher number of forms of maltreatment that were
experienced (Lang, Stein, Kennedy, & Foy, 2004). Colman and Widom (2004) found that male and
female adults with histories of childhood physical abuse and neglect had higher rates of relationship breakdown than non-maltreated comparisons; in addition, females were more unfaithful to
sexual partners and had less positive views of their partners. A history of harsh parenting experiences (yelling, spanking, slapping, shoving, hitting with an object, which the researchers defined
as overlapping with physical abuse) among male and female adults was found to be directly related
to their own harsh parenting practices (Simons, Whitbeck, Conger, & Chyi-In, 1991).
At the same time, Collishaw and colleagues (2007) found that 44.5 percent, a “substantial
minority” (p. 211), of adults in the United Kingdom who reported childhood sexual abuse or child
physical abuse (10 percent of their sample was abused) reported no mental health problems; resilient
abused individuals demonstrated greater psychosocial functioning than non-abused individuals in
the sample. Some American adult survivors of all forms of childhood maltreatment have described
themselves as successful and flourishing, surpassing common expectations of their capacity for healthy
relationships (partnerships, work, parenthood), often with the support of significant others, and
despite their past experiences of childhood maltreatment and mental health issues (Roman, Hall, &
Bolton, 2008; Thomas & Hall, 2008). While some adult survivors of childhood sexual abuse in the
United States have reported inheriting and carrying a legacy from families of origin (memories of
trauma, vulnerabilities to further abuse, and dysfunctional behaviors or ways of life) that they are
plagued by are stuck in it and perceive they have passed it on to their children, others are able to
reject it (or were trying) and create a new legacy (Martsolf & Draucker, 2008).
▸
Method
This study sought to understand the experiences of adults who had endured childhood maltreatment in their family of origin and had now already begun or were considering beginning their own
family, or had declined to begin one (i.e., voluntary childlessness). This study was grounded in a
social constructionist epistemology and guided by the methodology of critical interpretivism—a
blend of phenomenology, hermeneutics, and critical theory (Crotty, 1998; Good, 1994; Ricoeur,
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Chapter 16 Adult Family Relationships After Childhood Maltreatment
1986/2008). Following approval from the institutional research ethics board and having obtained
informed consent from each participant, I engaged in interviews with a convenience sample of
15 English-speaking heterosexual adults in Western Canada: 13 women and 2 men. Participants,
who ranged in age from 25 to 35 years (average of 30) self-assessed and self-reported that they had
been maltreated by one or more parents; maltreatment included physical or emotional abuse and
neglect, and exposure to family violence (a history of childhood sexual abuse was an exclusion
criterion). Twelve identified as European Canadian, two as Asian Canadian, and one as Indigenous
Canadian, with eight Protestant Christians among them, one Roman Catholic, and six with no religious affiliation. Seven participants were single, four were married, four were separated or divorced,
and four of the 15 were living with a parent or grandparent. Five of the women had one, two, or
three children, between 1.5 to 14 years of age. Their educational backgrounds ranged from a 1 year
of postsecondary college or university to doctoral degrees. Participants were employed in helping
fields (nine) (e.g., health, education, social services), academia (two), labor (one), or were students
(three), with a wide range of combined family incomes, between less than $10,000 to $130,000.
Eleven participants reported they had recently or were currently receiving mental health therapy
or treatment, while two reported they had never received services, or only in the past (two). Mixed,
eclectic coding (Saldana, 2013) and thematic analysis of the interview transcripts was informed
by theoretical concepts of metaphor, social roles, intergenerational gifts, explanatory models of
causation, and ideologies of forgiveness (Belicki, Rourke, & McCarthy, 2008; Biddle, 1979; Frank,
2010; 1995/2013; Fernandez, 1974; Fiasse, 2010; Flanigan, 1992; Godbout, 1998; Kristeva & Rice,
2002; Mauss, 1954/2011; Parsons, 1951; Ricoeur, 2004; Safer, 1999; Shweder, 2003).
▸
Findings
Family Choices
The women and men shared about their childhood experiences in violent, adverse environments.
Some had lived in battlegrounds of primarily emotional abuse, with some physical abuse and neglect,
and a violence of constant control and anticipation of unpredictable outbursts, with a failure by the
other parent to provide protection. Others were surrounded by collision zones of neglect, emotional
and physical abuse, and family violence, dominated by the constant chaos of family violence between
parents and their inability to parent related to mental health and substance use disorders. Still others
lived in disaster zones of emotional abuse, physical violence, and neglect dominated by the episodic
character of mental health and substance abuse disorders of the parent, with a failure by the other
parent to provide protection. Fortunately for some, grandmothers and other benefactors from outside the family supported the resilience of participants. As girls and boys, the participants found
themselves in compensatory roles, some of holding the family together by caring and mediating,
parenting siblings and parents, and others of resisting the family; all felt that they were unvalued or regarded as inadequate. Many realized they were deserted by absentee parents. As adults,
the participants perceived that their childhood experiences had created a risk of transmitting family
dysfunction to their children. The narratives they told seemed to reconcile these traumatic histories
with their reproductive decisions and their current relationships with their parents who wronged
them. Participants were at different stages and degrees of reconciliation: strained or harmonious
and full, partial, or absent of forgiveness. Some had reconciled with their parents, while others
reconciled their life history (past, present, and future) by themselves, with ongoing dissonance
with the offending parents.
Findings
191
Seven women had decided to become mothers; five had children and two were planning to
have children. Four of them had played parent-like roles in their childhood families. They described
themselves as meant to be mothers and able to give a good family life (Mattingly, 2014) to their
children and not perpetuate the milieu of family dysfunction they grew up in. These mothers were
good parents, or striving to be good parents, and they had forgiven, or were close to forgiving, their
parents. Four other women described themselves as not meant to be mothers, but rather meant to
be voluntarily childless, or to be another mother, or meant more for a helping career than for motherhood. Three questioned their capacity to halt the transmission of family dysfunction to children
of their own; they were good adults by respecting their identities and abstaining from parenthood.
The two men and two other women were undecided about whether or not they should have families, being uncertain of their ability to prevent the transmission of family dysfunction and to make
a good family life for children. They were good adults who were thoughtful about their reproductive decisions; if they were to become parents, they wanted to be good parents.
Ethics of Care
The participants’ reconstructions of themselves as good adults, good parents (or good abstainers
of parenthood), and good adult children provide a moral explanation that reflects an ethics of
care. Regarding people’s choices toward a good life, Gilligan (2011a) contrasted the ethic of justice
(i.e., reason, rationality, logic, fairness, rights, and rules) with the ethic of care (concerned with
emotion, body, relationships, helping, induction, interdependence, context) and asserted the need
to join these two approaches, which are both characteristics of human beings, both women and
men. According to Gilligan (2011b), in an ethics of care, moral judgments prioritize relationships,
connections, listening to all voices and perspectives, and the need we all have for caring in life. The
participants’ choices were pervaded by considerations of relatedness within themselves, and among
their spouses, their children, and their parents (potentially grandparents), the virtue of reconciliation, and the reality of past injustice, oppression, carelessness, and abandonment. Most of the women
and men also acknowledged that their parents had been immersed in similarly violent, injurious,
and unprotected childhood environments. These two generations had both felt fear, loneliness, and
disappointment in childhood and adulthood. The participants espoused a moral imperative to be
a good parent and to avoid harm in their family relationships.
Forgiveness
Most participants regarded forgiveness of their parents as a virtuous action to the benefit of themselves, their children, and their parents; however, it required change by their parent or a change in
the participant’s view of the parent’s actions. Their ethical deliberations were based on negotiations
of relationships and attending to their perception of their true selves. They had to reconcile the
suboptimal care by parents with the fact that some of those parents were themselves hurt and did
not intend or foresee harm to the participants. These parents had changed either a little, a lot, or
were incapable of change. In their ethical deliberations and choices around forgiving, the participants universally believed in the benefits of achieving forgiveness, and each wanted to be a
person who forgives. Most of them also promoted the value of intergenerational family relationships.
Forgiveness was enacted in different quantities and qualities of relationships with their children’s
(current or future) grandparents. Five participants who had unconditionally forgiven their parents
expressed a belief that forgiveness was an obligation to the self for well-being, and an obligation to
the unintentionally offending parents as elders and people worthy of grace. For seven participants
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Chapter 16 Adult Family Relationships After Childhood Maltreatment
who had forgiven or almost forgiven their parents, forgiveness (and healing) was conditional on
change in their parents such as acknowledging their wrongdoing, asking for forgiveness, or being
good, supportive grandparents; for some, insufficient change was a barrier to full forgiveness. Three
participants who had not forgiven their parents expressed a feeling of not being recovered and a
lack of redeeming actions by their parents.
CASE STUDY 161: REBECCA
As a child, “Rebecca” (pseudonym) was exposed to family violence and experienced emotional and
physical abuse and neglect by her parents who were living with mental health and substance use
disorders. She was once told she “deserved” this treatment. As an adult, Rebecca was also living with
disturbances in her own mental health. Rebecca suggested a similar notion of family members
“coming by it [i.e., mental health and substance use disorder] honestly,” although she also emphasized
the influence a childhood maltreatment environment had in her mental health struggles. Rebecca
reported that she had taken part in individual therapy with a professional recently. Rebecca expressed
empathy for her parents’ struggles and circumstances and understanding about the factors that
contributed to the “chaos and turmoil” of childhood family life:
Trying to raise a child and you’ve got all these problems going on. The child always seems to come
last. That’s basically where I was. I was just sort of the afterthought to everybody. They just sort of
lived out their drama without any thought of how that was going to affect me. I had to learn really
quickly to shut everything off, and act like everything was fine, and that I was fine . . . it was like,
shut up, don’t talk, don’t feel, don’t think.
She described how her primary caregiving parent was “at home . . . but . . . wasn’t really there . . . for
days and days and days . . . I would have to take care of myself” and as an only child she had to, out of
necessity, “make sure that things were done that had to be done” in her home. She reported that her
childhood self was “always searching for, usually older people to . . . fill that, I don’t know, parenting role.”
Rebecca reported a fortunate, mitigating factor: Her grandparents helped raise her, and “they were like
the constant in my life and they were every happy memory I ever had when I was a kid.”
Rebecca expressed insight into the link between her family of origin and her family of procreation.
She stated that when she decided to have a child it was because she wanted “someone to love” and
“somebody to love me,” thinking, “if I have a baby I’ll have somebody permanently to be there for me,
who I could love and who would love me forever.” In retrospect, these were “all the wrong reasons.”
The following excerpts demonstrate how she told her life story in a thoughtful and vulnerable way:
I was so young and just not in any situation to even have a child. I did it anyway because I thought it
was a good idea. But it’s definitely something now that I look back on it and I’m quite embarrassed by it.
He was everything I thought that I wanted at the time. I thought, this is the right thing to
do. This is the right time. I’m going to have my own baby. I’m going to have this great life and
everything’s going to be perfect.
I always had the best intentions, but I never thought about how hard it was going to be, and
what sacrifices were going to have to be made, and how things were going to change.
Rebecca wanted her own family to have the “life I never had,” however, in the following excerpts
she expressed the difficulty and challenges in forging that path:
I really, really wanted to be a really great mom . . . I didn’t realize how hard that was going to be.
When I watched TV or movies it seemed to be so easy. I thought that’s what life is going to be like.
But it didn’t turn out that way.
Case Study
CASE STUDY 161: REBECCA
193
(continued)
I always had the image that I was going to be this perfect mom. That I was going to totally
be different than what my mom was. I had a lot of struggles the first few years . . . But then as I
got older, I became more of the mother that I wanted to be. Or I was able to at least try to be that
mother. Even though I don’t really meet that a lot of the time. But I do my best. I think I’m getting
there, to the kind of mom that I want to be.
I feel I’m a parent in training. I’ve become a better parent . . . I was not prepared, at all, for
what it takes to be a mom. I did the best I could but there was a lot of guilt with that. Like a lot of
guilt . . . I’m still a parent in training. It’s still a struggle. I’m still learning.
Rebecca believed that she was repeating some behaviors and had recreated some dysfunction
(although she had not abused or neglected or exposed her children to family violence) reminiscent of
her own childhood, but it was greatly attenuated in comparison. She was striving to be a good mother,
sustained by a deep self-awareness. Nevertheless, Rebecca perceived a risk of transmission of family
dysfunction from her family of origin to her family of procreation. She described a worry about being in
a place between who her parents were and who she wanted to be:
I know those experiences have made me the person I am today . . . Sometimes, I see that as being a
barrier to the kind of person that I wish I was, because I’ve had those experiences, so I feel a little bit
more like I’m rough around the edges.
Rebecca’s narrative displays a reconciliation between her own childhood with parents with mental
health and substance use disorders and abusive behaviors, and the childhood she was creating for the
next generation as a parent herself:
My choices as a parent, or how I respond to my own child’s behaviour, has come a lot from my own
parents . . . Growing up, my parents were always doing the wrong thing . . . Those experiences have
given me that priority to do things with my child and be there with my child. I’m still a parent in
training. It’s still a struggle. I’m still learning . . . But I think overall, I’m not a bad mother at all. I know
that. I feel like I’m a better parent than my parents were. That’s something that I do intentionally, so
I think I’m doing all right . . . I’m trying. I’m doing the best I can. There’s a lot of that fear . . . I’m always
worrying about . . . My child always says, “Yeah, I know you love me Mom,” and “Yeah, you spend
enough time with me.” So, I’m always reassuring myself that I’m at least meeting some of those
goals that I have as a mom. When I became a mom though, I always had the image that I was
going to be this perfect mom. That I was going to totally be different than what my mom was.
Rebecca hoped that she would be able to say, about intergenerational transmission of dysfunctional,
traumatic, adverse, and violent family life, that “it stopped at me and won’t get carried on.”
Regarding her present relationship with her formerly abusive parents, Rebecca reported
that she had confronted them about the childhood maltreatment, and they had some difficulty
understanding her perspective and admitting to it, but she added that they were slowly changing.
They still disappointed her, but they were “trying to get better.” She had allowed and appreciated their
role as grandparents and their support of her parenting. The guiding philosophy for those decisions
was rooted in empathy and self-respect:
I think forgiveness is really important, because at some point you have to let go of what happened.
Because you’re not there anymore . . . I believe forgiveness is probably the first step. If we keep
holding on to that pain and that fear of what life was like when we were younger it keeps us
trapped. So, forgiveness is that good first step, I think, to making better choices for yourself and
for your decisions to become a parent and how you parent . . . to forgive my parents and just to
(continues)
194
Chapter 16 Adult Family Relationships After Childhood Maltreatment
CASE STUDY 161: REBECCA
(continued)
acknowledge that they were in a different place then. They were like wounded children themselves,
and so they were trying to parent a child when they’re still really children. They’re still emotionally
little kids, too. They did the best that they could. I know that now. But I’m not that little kid
anymore. I don’t have to be trapped into that thinking anymore. That I can do something about
it. But it’s hard. It’s really, really, hard. That’s where I’m at right now . . . It’s important to forgive
the people in our past or what’s happened in our past . . . I think if we don’t do that, we just keep
carrying that on.
Rebecca forgave the wounded children that her parents were when they wounded her. Part of her
process of healing those wounds was realizing that although she wished her life had been different,
the adversity in her life had made her an empathic person, a “better person” for overcoming it.
▸
Summary
Practice Implications
In nursing practice settings, such as community postpartum and childhood health promotion clinics
and home visits, and in psychiatric mental health nursing practice, to name a few, nurses and nurse
practitioners can take the opportunity to assess and support new and prospective parents. Rebecca’s story highlights the concerns that nurses can anticipate some adult survivors may be facing as
they contemplate if and when they will have children, or when they become new parents: the possibility of replicating an adverse childhood family life; how to parent positively, constructively, and
effectively; whether to welcome their parents as grandparents and how to negotiate those relationships; whether or not and how to forgive in a safe, self-respecting manner. Nurses and nurse practitioners can anticipate a higher prevalence of mental health disorders among adults who have
been exposed to violence in childhood. Kearney (2001) asserted that rigorous, complex qualitative
research findings can be reasonably utilized in healthcare practice by providing an understanding
of the common concerns and pathways of a particular health experience that may justify the provision of teaching, guidance, and coaching based on expected supports and services needed. This
application should be based on thorough assessment and judgment of the transferability of research
findings to individual clients (Kearney, 2001). When there is a match between qualitative research
findings and a client’s circumstances, this can point to potential clinical problems and intrapersonal and interpersonal aspects of experience to explore and track the course of healing and life
development (Kearney, 2001). Nurses might consider the intervention of forgiveness facilitation
upon examination of the research evidence (Recine, 2015) when a client believes in and desires to
forgive, while keeping in mind the potential risks of forgiveness (Belicki et al., 2008). This study of
the life transitions and choices of 15 men and women who had experienced childhood maltreatment, many of whom lived with parents with mental health and substance use disorders—and in
particular the case study of Rebecca—challenges nurses and nurse practitioners to self-assess their
beliefs about and responses to childhood maltreatment, intergenerational transmission of family
dysfunction, reproductive decision making, and forgiveness, and to consider whether they might
find similar experiences among the populations they provide nurse care to, and be aware of potential needs for psychosocial support.
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CHAPTER 17
HIV Prevention Education
Alexander Giles
OBJECTIVES
At the end of this chapter, you will be able to:
1. Distinguish between comprehensive HIV prevention education versus minimal HIV education
for teens as a vulnerable population.
2. Identify at least three reasons teens are at risk for HIV infection and how these risks may be reduced.
3. Discuss how parental and societal influences affect HIV prevention education in the United States.
▸
Introduction
Since 1980, when HIV first came onto the public stage, it has become an epidemic with a global
reach. Inconsistent education in public schools, parental discomfort with the topic, and a youth
population that lacks appreciation for the dangers of HIV combine to keep young people uneducated and unmotivated to adopt behaviors and practices to prevent infection in themselves and
those close to them. In 2015, the Centers for Disease Control and Prevention (CDC) estimated that
over 1.1 million people in the United States are infected with HIV, and more than 50,000 new infections are transmitted annually. While the seriousness seems obvious to some, U.S. youth are at high
risk to contract the illness. A combination of factors contributes to a lack of effective methods to
educate our young people about what HIV is, what it does, and how to prevent future infections.
HIV is a virus that attacks an individual’s immune system. Despite community prevention
efforts, including media campaigns, printed educational materials, and substantial medical management, HIV remains a major health concern within the United States. Approximately 75 percent
of people with HIV develop AIDS within 15 years. A diagnosis of AIDS is made when the CD4
count falls below 200 and in the presence of opportunistic infections such as Kaposi’s sarcoma or
Pneumocystis jiroveci. Although advances in medicine have decreased the mortality rates of individuals suffering from this disease, a cure has not been found; approximately 13,000 individuals die
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
197
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Chapter 17 HIV Prevention Education
from AIDS in the United States annually. Since the early 1980s when the AIDS epidemic was recognized in the United States, more than 700,000 Americans have died from the disease—36 million
worldwide (CDC, 2015).
▸
Current Trends for Youth
Of all the age groups, young people today are at the highest risk of infection. The CDC (2015) reported
that there were 62,400 youths living with HIV in the United States in 2012 and the Advocates for
Youth (n.d.) organization reports that 13- to 24-year-olds continue to be the highest risk group for
HIV infection. In 2013, there were approximately 9,996 new infections in this age group, or 21 percent of all U.S. infections for that year. Significantly, 81 percent of those infected were between the
ages of 20 and 24 years old. Within this age group, gay and bisexual individuals, and minorities such
as Blacks and Hispanics account for 77 percent of the HIV infection rates (CDC, 2015).
Unsafe, unprotected sex practices result in the highest incidences of transmission due to exposure
to vaginal and seminal secretions (CDC, 2012, 2015; Malone & Rodriguez, 2011). The second
highest cause of HIV exposure is needle sharing, which is associated with drug abuse and carries a
0.06 to 2.40 percent risk. A needle stick injury with known HIV-infected blood carries a potential
0.32 percent risk of transmission to the injured party (NAM Publications, n.d.). The highest risk
factors of HIV exposure even for the 13- to 24-year-old age group are unsafe sexual practices and
needle sharing among drug users.
▸
Theoretical Basis
To understand and drive motivation in our youth, this study will draw from the health belief model.
This is a dynamic model that incorporates choice and decisions to make positive health choices
versus encountering consequences (Rosenstock, 1974). The health belief model proposes that
people’s beliefs about health problems and their perceptions about the benefits of action and the
barriers to action explain their level of engagement in health-promoting behavior. It suggests that
a person’s behavior and choices are driven by his or her expectations of the consequences of not
adopting new practices. The model considers six constructs:
1.
2.
3.
4.
5.
6.
Susceptibility: Does the person perceive vulnerability to the specific disease?
Severity: Does the person perceive that getting the disease has negative consequences?
Benefits minus costs: What are the positive and negative effects of adopting a new
practice?
Perceived barriers: Is the benefit of a behavioral change outweighed by the perceived
obstacles in making a change?
Cues to action: Triggers such as outreach posters or pamphlets to remind the individual
of the benefits of low-risk behaviors and consequences of high-risk behaviors.
Self-efficacy: Perception by the individual that he or she is capable of performing a
behavior in a competent manner (Glanz, Rimer, & Lewis, 2002).
The work of Fisher and Fisher (1992), specifically their components of perception and motivation, address much of what the health belief model proposes. Behaviors can and may be changed
if the individual perceives a negative consequence and is thereby motivated to not engage in a
high-risk behavior. Considering the importance of HIV prevention and education for youth, the
young may only make safe decisions for prevention if they are armed with current knowledge of the
consequences of their behavior along with the benefits of positive health behaviors. Moodley and
Cases Studies
199
Phillips (2011) conducted a study of college students and HIV knowledge and behaviors. Their conclusions parallel those of Fisher and Fisher (1992): High-risk sexual behaviors tend to be reduced
when motivation to avoid consequences is present.
▸
Cases Studies
Exemplar Cases in Urgent Care and Primary Care Clinics
This writer works in the urgent care/primary care settings as a family nurse practitioner in the metro
Atlanta, Georgia, area. It is common to see high school and college students owing to proximity to
several high schools, three major universities, and four technical college locations.
CASE STUDY 171: P.J.
P.J., a 19-year-old White male, single, presented to the urgent care clinic reporting sore throat and
“mono-like” symptoms, and expressed concern he had caught mono from an ex-girlfriend. He reported
no known sexually transmitted disease (STD) exposure history, no significant medical or surgical
history, and that he had never been tested for HIV. He reported a sexual orientation of heterosexual
with inconsistent use of condoms, and he stated his female partners were “all clean” and all stated they
were “clean.” He stated 10 female sex partners in 4 years to the best of his recollection, and 3 were “onenight stands” while drinking.
Initial exam of P.J. revealed red throat, swollen cervical lymph glands, and appearance of fatigue.
He reported abdominal tenderness in the left upper quadrant with mild hepatomegaly.
Laboratory tests were done for hepatitis panel, CBC, and HIV. It did take some counseling and
time with the patient for him to agree to these tests. Test results returned in 2 days revealed hepatitis
C acute infection and the HIV results were positive. Based on the results and recent history, it appeared
he was in the seroconversion state with HIV and the hepatitis C exposure was recent.
P.J. returned to the clinic for his results and appeared to experience disbelief that he could have
hepatitis. He stated there was “no way” he could be HIV positive. As the counseling session continued,
he did state that he had “some knowledge” of HIV from health class in high school, but that the primary
message he took from that education was to follow abstinence and use condoms if there was a “risky
partner.” He seemed to have little to no relevant knowledge regarding heterosexual transmission of
HIV or that it could be transmitted by a seemingly “healthy-looking person.” The patient was referred to
counseling services at his university and to a local infectious disease practice for follow-up care.
CASE STUDY 172: S.R.
S.R., a 16-year-old Black male, presented to the primary care clinic for follow-up care for an anorectal
herpes infection. He was accompanied by his mother who stated she was fully aware of his diagnoses
and the patient stated he wanted her to remain for information. He was diagnosed with genital
herpes at the age of 15. He was not tested for HIV. He reports being sexually active since the age of 13.
He identifies as bisexual and has had sex with men much older than him who identify as bisexual.
He declined all STD testing in the past but is now willing to test. He stated he met another male his age
and that they are both testing for STDs before engaging in sexual activity.
(continues)
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Chapter 17 HIV Prevention Education
CASE STUDY 172: S.R.
(continued)
The initial exam of this patient revealed healing anorectal lesions in an otherwise healthy-appearing
patient. A full STD panel was sent to the laboratory for testing. The lab tests returned in 48 hours with
positive HIV results and negative for hepatitis A or C. The patient did have a positive titer for hepatitis B
but had received the hepatitis B vaccine series.
S.R. returned for his lab results and for post-HIV test counseling, along with his mother. Upon
hearing the results of his HIV testing, he was basically matter-of-fact in his response. He stated he
“wasn’t surprised but not too upset about it” since he learned a few of his sex partners were known to
“sleep around.” The mother’s reaction was basically one of silence with some tearfulness. She stated she
felt like this could occur and she had tried to convince the patient to wait until he was “older” before
having sexual relations. She relayed she had very little knowledge about HIV but was still concerned
that anorectal herpes could become cancer later in his life.
S.R. demonstrated little working knowledge regarding HIV transmission with the exception of
knowing anal sex “could be a way to get it.” He did not understand the risks associated with infection
but did state he knew there was “medication to treat it that wasn’t so bad.” The patient received referral
to a pediatric infectious disease specialty.
CASE STUDY 173: T.L.
T.L. a 20-year-old White female, presented to the urgent care center for lab work as her primary
care physician office was closed and she had been referred to us for an after-hours visit. The patient
presented with her infant in a stroller and waited patiently in the waiting area. The phlebotomist had
difficulty with finding a suitable site to draw blood, and this author was asked to draw the blood.
T.L. had the appearance of a happy, new mother. She was lean, petite, blonde, and playing with
her baby when the lab draw was being prepared. The requisition had been placed on the counter and
the tubes were laid out on the draw table. The patient’s arm was prepped, blood specimen obtained,
and she left. After the patient left, the tubes were given to the phlebotomist who stated, “ I am so glad
you were able to get that blood, I was just too nervous and knew I would miss.” When asked what she
meant, the phlebotomist stated, “ Didn’t you look? That girl was here for an HIV viral load and her T-cell
count. She’s had HIV since she was 15.”
Although standard precautions are followed by this writer, the actual reason for the lab tests
being performed were not in the immediate realm of thought with regard to HIV while looking at a
young healthy mother playing with her baby.
▸
Conditions of Risk
The impact of not properly educating teens leads to higher HIV infection rates and undiagnosed
infections. According to the Advocates for Youth (n.d.), there are disproportionate HIV risk factors
for teens in the 13- to 24-year age range compared to the general population. Primary risk factors
include the following:
1.
2.
3.
Low perception of risk
Declining health education
Low rates of testing
Conditions of Risk
4.
5.
6.
7.
8.
9.
10.
201
Low rates of condom use
High sexually transmitted infection (STI) rates
Older HIV-infected partners
Substance abuse/exploration
Homelessness
Inadequate HIV prevention education
Feelings of isolation
Thoughts of invincibility and egocentrism are common themes of thought within adolescents. High-risk sexual behaviors are often the result of a “sense of omnipotence,” lack of proper
HIV education and prevention, and poor motivation to practice safe sexual practices. These types
of self-perceptions erode appreciation for the necessity of condom use while the stigma associated
with a diagnosis of HIV infection decreases the likelihood of HIV testing. Most adolescents believe
that if a potential sex partner looks healthy, then he or she could not be HIV positive. While adolescents often experience adult emotions, they sometimes have a child’s understanding of the world,
which leads to poor choices and impulsive behaviors (Swenson et al., 2015).
The CDC (2015) reports that approximately 46 percent of high school students have had
sexual intercourse once, or were sexually active when surveyed. Condoms were found to be used
approximately 68 percent of the time by males and 54 percent of the time by females. Chandra,
Mosher, Copen, and Sinoean (2011) reported that 45 percent of females age 15 to 17 years had
engaged in oral sex; 48 percent of males reported the same. By age 18 to 19 years, these figures
increased to 63 percent of females engaging in oral sex and 70 percent of males reported similar
sexual behaviors.
Misconceptions, Ignorance, and Apathy Impede
Preventive Measures
Brown et al. (2011) conducted a Safe Thinking and Affect Regulation program, which targeted
adolescents in alternative schools to evaluate their level of HIV knowledge as well as the results of
an HIV education intervention. Researchers surveyed students online regarding their HIV knowledge, attitudes, and sexual behaviors. The study consisted of 195 students who received the HIV
education intervention, and a control group that did not. Incorporating the HIV Knowledge Scale
and the Condom Use Self-Efficacy Scale, these researchers noted a significant decrease (p < .05) in
high-risk sexual behaviors for the group that received the intervention at 3- and 6-month intervals
after testing. There were no significant differences between the groups at 9 months after testing.
The authors suggest that the findings suggest the value of educational interventions; however, additional studies should be conducted for review and remediation as the interventions tended to fade
at the 9-month mark (Brown et al., 2011).
Knowledge alone is not enough to make an effective change in high-risk behaviors; an individual must be motivated to change. Fisher and Fisher (1992) constructed a model known as the
information-motivation-behavior model to better understand issues related to college-age freshmen and HIV risk behaviors. The model names three essential components of HIV risk reduction
in persons of this age group: (a) being supplied information about HIV transmission and the means
of preventing HIV transmission, (b) motivation to change their HIV-risky behavior, and (c) behavioral skills to prevent HIV risk behaviors based on their knowledge and motivation. This model has
been used worldwide since its development by hundreds of research projects related to changing
and reinforcing positive health choices and behaviors (Ndebele, Kasese-Hara, & Greyling, 2012).
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Fisher and Fisher concluded that while information was essential to better equip this age group to
make informed decisions, motivation was the most essential determinant to the behaviors chosen.
Apathy regarding use of condoms in intimate relations also emerges as a theme among these
college students. Hammer, Fisher, and Fitzgerald (1996) conducted focus groups among college
students inquiring into the conduct of HIV risk behaviors and intimate heterosexual relationships.
Findings indicated that a stigma existed around condom use, as they implied the user’s questionable history of partners and promiscuity, and caused romantic relationships to suffer. One misconception of participants was that if they had been exposed to an STI from their partner, it was too
late to start better prevention practices anyway. Responses also indicated that participants decided
against condom use because of reduced sexual sensation and their tendency to disrupt spontaneous
sexual activity. Of additional interest, all respondents reported having unprotected sex with previous partners, but only 10 percent of the participants had ever been tested for HIV.
Researchers and organizations around the world conclude that youth should have access to
HIV information early in life. In the United Kingdom, an organization called AVERT coordinated with agencies to prevent HIV infection and AIDS worldwide through education, treatment,
and care. It promotes early childhood education in multiple stages in order for youth to assimilate
the information according to their age and development. They also provide appropriate sex education material for their users (AVERT, 2014). The Talk Institute (n.d.), a family education website, educates families about how to talk to each other about sex, teaches parents how to introduce
children to their genitals in early childhood, and teaches young people how to protect themselves
from blood-borne spills and body fluids.
Barriers to Effective HIV Prevention Education
As devastating as the disease is to our youth, barriers to educating young people effectively about
HIV and its risks still exist. Education in public schools is inconsistent, parents of youth are held
back by their discomfort when approaching topics of sexuality, and there is no consensus about
the best and most appropriate age to begin educating about HIV. Our country also has not identified who should be responsible for educating U.S. youth about this important topic (Curvino &
Fischer, 2014). Parents often mistakenly believe that their children are too young to learn about
this dangerous problem. Yet other parents may endorse the public schools to teach comprehensive sex education (McKee, Ragsdale, & Southward, 2011). Misconceptions about HIV education
abound, such as the belief that discussing sexuality with a child may actually encourage sexual
activity. Effective education for youth is simply not occurring at the rate that would be required
to begin changing mind-sets and behaviors in our at-risk young population. It would seem logical
that educators in school systems provide our young with sufficient education about HIV prevention (Sexuality and Education Council of the United States, 2009). However, there are no standards or policies in place to indicate the optimal age ranges to begin HIV prevention and/or sex
education to school-aged youth. In the meantime, tremendous opportunities to stave off the epidemic are being lost.
The HIV Prevention Education Dilemma in the United States
National standards across the country continue to vary with regard to what is taught for HIV
prevention education, and this is often the direct result of public opinion, religious practice, and
parental influence. In 1996, the Lucas County, Ohio, Department of Health conducted a public poll
via telephone to determine parental views and attitudes on HIV prevention education. Of interest,
Teens and the Age of Technology: A Potential Ally
203
the parental views were in favor of the public schools being more comprehensive in sex education,
promoted condom use, and approximately 56 percent of respondents believed there should be an
increase in HIV prevention education. As researchers in Mississippi continued to try to determine
the view of parents in the “Deep South,” McKee and colleagues (2011) conducted a telephone study
with parents of public school students (N = 3,600). Results were most encouraging for increased
HIV prevention education with more than 90 percent of parents advocating increased public school
HIV prevention education and over 50 percent of parents encouraging a more comprehensive sex
education program for STI prevention. Minnesota public school parents were surveyed in 2009
regarding HIV prevention and public condom provision in their state. Findings were supportive
of earlier student education in high schools and promotion of open dialogue (Eisenberg, Bernat,
Bearinger, & Resnick, 2008). In addition to these studies, the Journal of School Health published
findings of a Florida study that indicated significantly high parental support for age-appropriate
HIV prevention education (Barr, Moore, Johnson, Forrest, & Jordan, 2014).
In response to much supported research, an age-appropriate website to teach HIV prevention education may be an excellent adjunct to public school and private family use. This project is
focused on discerning the overall ideas of parents regarding the need for increased HIV education
in age-appropriate means, as well as an agreeable website for prevention education.
Limitations of Public Education
Many schools and state agencies offer comprehensive education about sex and STIs that teaches
and promotes safe sex, condom usage, and abstinence for heterosexual, gay, and bisexual youth.
Some states prefer not to use federal government materials and keep HIV and sex education to a
minimum. For example, Georgia state law requires the Georgia Department of Education (n.d.) to
educate Georgia students about HIV prevention, STDs, and pregnancy, but each county’s school
board is allowed to determine how to deliver the material. Also, county school systems that accept
federal abstinence education funding only teach about abstinence and are not permitted to provide
instruction on other prevention measures (Malone & Rodriguez, 2011). Teens who have premarital
sex have more unplanned pregnancies, more STIs (including HIV), and are often ignorant about
appropriate sexual health care (Rolleri et al., 2014). Georgia’s health rankings are among the poorest
in the nation. Georgia ranks fifth in the United States in rates of HIV infection. Clearly, providing
sufficient HIV education and prevention to youth is imperative. Advocates for Youth (n.d.) argues
that it is the responsibility of society to educate youth for self-protection.
▸
Teens and the Age of Technology: A Potential Ally
The Internet is a powerful instrument for accessing information and connecting with others
around the globe. Many young people use it daily for social media, games, schoolwork, and other
recreational uses (Lightfoot, 2008). Lenhart, Ling, Campbell, and Purcell (2010) reported that
97 percent of youth aged 12 to 17 years have online access in some form or another; 76 percent
have Internet access in their homes. While the Internet serves as a source of entertainment, it can
be an invaluable method for providing HIV education to the young (Pingel, Thomas, Harmell, &
Bauermeister, 2011). While there are countless HIV information sites across the web, most of them
are written by and for adults and are ineffective and inappropriate for developing minds. Many
parents are hesitant to go online to help educate their kids about sexual issues because they are
concerned about exposing their children to adult content.
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Chapter 17 HIV Prevention Education
Project
The author’s doctor of nursing practice (DNP) graduate study was conducted to assess parental attitudes regarding HIV prevention education and youth. The study is briefly described.
Procedures and Participants
The project was a qualitative study utilizing a 25-question, multiple-choice format with two additional short-answer questions asking what the parent would or would not like to see on an HIV
prevention education website that is age appropriate. The target sample number was met at 150 parents
or self-identified legal guardians. The study site for this project was a metro Atlanta, Georgia, public health department. The DNP student researcher conducted the survey in the public lobby areas
only from a provided table setup with a poster inviting parents to participate in the survey to create an age-appropriate website to teach youth about HIV prevention. The survey was provided to
the participants and they placed the completed survey in a black box on the table that was in the
researcher’s view at all times. There was no researcher access to any medical care or specific patient
areas. Consideration has been made for the sensitive nature of the topic of HIV; neither sex education nor HIV education were provided by the researcher. Personal disclosures of HIV status by
participants did not affect their participation. Nonparents who offered opinions were appreciated
but not invited to complete a survey.
Instrument
This anonymous 25-question survey was developed by the Lucas County Health Department for
a poll conducted in 1996. The survey allows for demographic information collection, and participants answer such questions in provided ranges. One example question is “What percentage of
high school students do you think have had intercourse?” and answer choices include the following:
(a) 25 percent or less, (b) 26–50 percent, (c) 51–75 percent, (d) 76 percent or greater, (e) I do not
know. Questions were also posed regarding what the respondent felt about increasing, decreasing,
or keeping the same in present public education about HIV prevention education, abstinence,
condom use, and comprehensive education. Basic yes-or-no questions were posed if the participants believed they would visit an age-appropriate HIV prevention education website and if the participant would allow his or her child to visit an age-appropriate HIV prevention education website.
The final two questions on the survey were opinion-based questions asking participants to write in
what they did or did not want to see on an age-appropriate HIV prevention education website. All
questions on the survey remain appropriate to 2015 parental questions and there appeared to be
no outdated types of questions with regard to what school-age children are encountering in 2015.
Results
Sample Characteristics
The total sample of N = 150 responses was collected, and cases containing invalid values were
dropped from the analysis. The resultant sample size was N = 141. Overall, the data suggest that
many participants were from relatively disadvantaged backgrounds because only 3.5 percent were
college graduates and fewer than 10 percent of participants had annual incomes that were higher
than $30,000.
Project
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Parental Perceptions
The data indicate that parents almost unanimously (97.2 percent) supported education of their children
about HIV/AIDS. Not only that, but 87.1 percent of parents believed that the amount of this education should be increased. There is also evidence that many parents believed they were not equipped
with enough skills and knowledge to educate their children about the prevention of HIV/AIDS.
The vast majority of parents (78.6 percent) agreed that HIV/AIDS education must emphasize all
methods of protection. One of the most contentious topics was whether posters promoting the
use of condoms were appropriate for school environments; many parents objected to depicting
rolled-up condoms on posters (57.4 percent). There was no uniform opinion as to what the appropriate age was to start HIV education.
Analysis of Associations
A series of chi-square bivariate analyses were conducted to understand if parents’ responses were
dependent on race, gender, age, education, and income. As indicated by chi-square tests, the vast
majority of responses were not associated with these sociodemographic characteristics. Only statistically significant associations are presented here.
There was statistically significant association, χ2(8) = 25.0, p < .01, between the race and
response to the question “Would you object to a poster in your child’s school with the message ‘If
you have sex use a condom’?” It was found that 5.7 percent of Whites said that they would object
to the poster; however, among Black participants this figure was 36.7 percent.
There was statistically significant association, χ2(8) = 37.8, p < .01, between the level of parental
education and response to a question “Should the child’s school provide education and information about HIV/AIDS prevention?” Only 60 percent of those parents who only had elementary
education believed that the topic should be taught at school, whereas close to 100 percent of parents
with education above the elementary level believed in the importance of education on this topic.
There was a statistically significant association between the level of parental education and
types of HIV/AIDS prevention methods discussed at school, χ2(16) = 61.4, p < .01. Although the
relationship between the two variables was statistically significant, there is no clearly distinguishable patterns between the two variables.
There was a statistically significant association between the level of parental education and
their beliefs about the appropriate age to start HIV/AIDS education online, χ2(16) = 24.6, p = .02.
Although the relationship between the two variables was statistically significant, there is no clearly
distinguishable patterns between the two variables.
There was a statistically significant association between the level of parental income and their
beliefs about whether their oldest child has had intercourse, χ2(16) = 109.9, p < .01. Although the
relationship between the two variables was statistically significant, there is no clearly distinguishable pattern between the two variables.
In general, parents support education of their children about HIV/AIDS at schools. Overall, the
data suggest that the level of parental education may have an effect on their attitudes about HIV/
AIDS education at school. Posters promoting the use of condoms may result in parents’ mixed reactions, and for this reason caution should be exercised when such posters are used.
It is hoped that parents will be able use such websites to educate their children about the topic
when the child is at an appropriate age, in the privacy of their own home. This outcome would
encourage parental involvement, provide a pace more comfortable for regional educators, and hopefully provide current, accurate, and valuable information to the young person. As society continues
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Chapter 17 HIV Prevention Education
to view the HIV diagnosis as a stigma, valuable time is being lost to intervene and provide relevant,
important information to our youth. Parents and educators must make an informed commitment
to ensure the best possible outcomes for our new generations.
Conclusions
It is important to educate youth as early as possible about HIV prevention. There is a marked
disparity in the consistency of education versus the known increasing rate of HIV infection in the
teen populations across the country, specifically in the southern states. Healthcare providers, public
health services, and HIV/AIDS-related service groups must voice concerns at the county, state, and
federal levels for enhanced HIV education in the public schools. The prevention of HIV infection
is far more evident as an intervention than the “pound of cure” treatments required in thousands
of newly HIV-infected youth each year.
▸
Summary
This chapter was an attempt to educate nurses about the importance of educating young people
about HIV early enough to prevent misconceptions and poor self-care practices. The case studies
and research example provide pointers for patient and parent education.
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Barr, E. M., Moore, M. J., Johnson, T., Forrest, J., & Jordan, M. (2014). New evidence: data documenting parental support
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Curvino, M., & Fischer, M. (2014). Claiming comprehensive sex education is a right does not make it so: A close reading
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Eisenberg, M. E., Bernat, D. H., Bearinger, L. H., & Resnick, M. D. (2008). Support for comprehensive sexuality
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Hammer, J., Fisher, J., & Fitzgerald, P. (1996). When two heads aren’t better than one: AIDS risk behavior in college age couples.
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/answering_childrens_quest.html
UNIT III
Practice and Programs
In theory, there is no difference between theory and practice; In practice,
there is.
—Chuck Reid
© RichLegg/ E+/ Getty Images
CHAPTER 18 Obstetric Fistula: The Cost to Child Brides . . . . 211
CHAPTER 19 Caring for the Transgender Community. . . . . . 219
CHAPTER 20 Developing Population-Based Programs
for the Vulnerable. . . . . . . . . . . . . . . . . . . . . . . . 229
CHAPTER 21 The Hepatitis C Epidemic: Outreach and
Intervention for Boomers . . . . . . . . . . . . . . . . . 239
CHAPTER 22
© Bartosz Hadyniak/ E+/ Getty Images
Trauma-Informed Primary Care: Promoting
Change Among Patients with Early
Life Adversity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .247
CHAPTER 23 Opioid Abuse and Diversion Prevention
in Rural Eastern Kentucky . . . . . . . . . . . . . . . . . 257
CHAPTER 24 Culturally Contextualized Community
Outreach Program to Promote Breastfeeding
Among African American Women . . . . . . . . . . 267
CHAPTER 25 Strangulation Related to Intimate Partner
Violence: Caring for Vulnerable Women
in the Emergency Department . . . . . . . . . . . . . 277
CHAPTER 26 The Effects of Gun Trauma on Rural
Montana Healthcare Providers . . . . . . . . . . . . . 291
209
© MachineHeadz/ iStock/ Getty Images
CHAPTER 18
Obstetric Fistula: The Cost
to Child Brides
Jessica Ellis, Laura Elledge, and Mary de Chesnay
OBJECTIVES
At the end of this chapter, you will be able to:
1. Identify populations and individuals with risk factors for obstetric fistula.
2. Understand the need for psychosocial interventions and support for those suffering from
obstetric fistula.
3. Understand access and care for surgical repair of obstetric fistula in survivors.
▸
Introduction
One of the most stigmatizing physical conditions faced by young women who experience childbirth
at an early age is obstetric fistula. Obstetric fistula (OF) is an injury to the soft vaginal tissues that
creates an opening between the vaginal wall and bladder (vesicovaginal fistula) or the vaginal wall
and the rectum (rectovaginal fistula). Easily preventable for women in developed countries who
have the choice to delay sex and childbirth until their bodies have matured, fistula is not preventable for many child brides. When grown men marry girls as young as 5 years old whether or not
they keep the common promise to abstain from intercourse with their bride until the girl reaches
adolescence, the girl is at risk of becoming pregnant at an early age. Pregnancy at a young age places
girls at a high risk for OF in childbirth. Complications occur because of the small size of the immature pelvis and the inability to birth a full-term infant. During childbirth the fetus becomes wedged
in the birth canal for a prolonged period causing the soft tissue of the vaginal wall to become ischemic and die, leaving a hole in its place. In these cases, the young girl often gives birth to a stillborn baby. In areas where high rates of OF occur, such as Sub-Saharan Africa, there is a profound
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
211
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Chapter 18 Obstetric Fistula: The Cost to Child Brides
shortage of care, such as inadequate access to prenatal care, skilled birth attendants, and surgical
service such as cesarean delivery. OF causes women to leak urine and/or feces, which creates social
stigma, depression, and isolation. Additionally, physical symptoms of OF include high rates of
infection and physical pain. OF typically coincides with stillbirth, and the combination of the two
often leads men to return their young wives to their families of origin, another source of stigma.
This chapter is an introduction to a health problem that many nurses in industrialized countries
may have never seen but that afflicts thousands of young girls in developing countries. However, with
globalization comes an increasing population of refugees and immigrants from countries where child
brides are common, so it is critical for all nurses to be aware of the problem and the risks it poses.
▸
Background
Types and Causes of Vaginal Fistula
The causes of vaginal fistula include prolonged labor, trauma, early childbirth, surgical mistakes,
and other causes, such as inflammatory bowel disease, infections, tumors, Crohn’s disease, cancer,
and radiation to treat either gynecologic or lower abdomen cancers (Alders, Ronsmans, Calvert, &
Filippi, 2013; Lewis & de Bernis, 2006). Gynecological surgeries such as cesarean section and hysterectomy occasionally lead to an accidental nick that produces a vaginal fistula. In most cases, a
surgically caused fistula is small, diagnosed early, and relatively easy to repair. Surgically caused
vaginal fistulas are most common in developed countries.
Traumatic Fistula
A traumatic vaginal fistula is a rare form of fistula and is caused by sexual abuse, traumatic rape,
or complications of unsafe abortion (Lewis & de Bernis, 2006). Traumatic fistulas are found in
those areas of the world where rape is a common result of intertribal conflicts and guerrilla wars.
Damage during traumatic rape can be inflicted by men through gang rape, and also by rape with
foreign objects such as tree branches or guns.
Obstetric Fistula
An OF is caused by prolonged or obstructed labor (Lewis & de Bernis, 2006). Obstructed labor
occurs when the maternal pelvis is either too small or is misshapen and will not allow the fetal head
to pass through the pelvic opening. Young adolescent girls may have an undeveloped pelvis and are
especially susceptible to obstructed labor. If a woman experiencing this condition labors for several
days without seeking health care, her vaginal tissue will lose blood flow, and tissue necrosis begins,
making her vulnerable to OF. Such births rarely produce live infants. A vesicovaginal OF is more
prevalent than a rectovaginal OF owing to the typical angle of fetal descent during labor and proximity to bony structures in the pelvis.
Statistics
OF is a serious problem for many women in developing countries and especially in regions of
Sub-Saharan Africa and Asia. The estimated prevalence rate is 3.5 million women worldwide, with
The Lived Experience
213
an estimated incidence rate of approximately 130,000 new cases annually (Wall, 2012). Many factors
affect the rates of OF, including high rates of poverty, early age of marriage, harmful traditional
practices, and sexual violence. Poverty creates a backdrop of illiteracy, malnourishment, and meager living, all of which contribute to the occurrence of OF. Girls are married young in arranged
marriages as a long-standing cultural tradition or sold into marriage at a young age by their families,
and because of traditions and women’s role in these societies, intercourse happens before puberty,
with pregnancy occurring shortly after the first menarche.
An estimated 15 million girls are married every year before they turn 18. Some girls in developing countries are married as young as 8 or 9. One in nine girls is married by age 15, and one in
three by age 18. These numbers reflect the fact that more than 700 million women alive today
were married as children. Child marriage takes place around the world and in different cultures:
In South Asia, 46 percent of girls are married under 18; in Sub-Saharan Africa, the number is
39 percent; and in Latin America and the Caribbean it is 29 percent. The Middle East and North
Africa, East Asia, and the Pacific have smaller but still significant numbers, ranging between
15 percent and 20 percent.
The scarcity of skilled birth attendants in many regions of the world puts child brides at high
risk of OF. Standard safe birth interventions that are commonly used in developed parts of the world
would prevent this condition. OF is rarely seen in the United States and other developed countries
because of later marriages, adequate nutrition, and greater access to health care, including the availability of hospital facilities and trained surgeons (Wall, 2006).
▸
Significance for Nurses
Nurses in the United States have a responsibility to know about OF, complications, and treatment
options. While the United States does not permit child marriages, children under 18 can be married
with parental consent or under a judge’s order, and pregnancies in such marriages carry the risk of
OF (U.S. Marriage Laws, 2015). Children raised in a cult or sold into a marriage illegally are also
at risk (Unchained at Last, 2016; The Hope Organization, 2016).
The U.S. population with the highest risk of OF, however, is immigrants and refugees. The
United States is an international hub for immigrants and overseas professionals. Women born in
other regions of the world might have been married as children. Human trafficking victims may
have been first married as children. Likewise, medical professionals trained in the United States who
participate in foreign missions to countries that practice child marriage should be knowledgeable
about OF. Estimates put the number of women with OF in need of repair in Sub-Saharan Africa
at more than 1 million.
▸
The Lived Experience
What is it like for girls to be married as children, then be shunned by their husbands and families because of a fistula and a stillbirth? Domestic violence frequently increases the vulnerability of
these children. What can nurses do to help? Some girls have shared their stories publicly. Fatima
and Nathi are real girls who experienced fistula; Aisha experienced child marriage, stillbirth, and
domestic violence.
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Aisha
Aisha was 10 years old when she married her 16-year-old husband.
The marriage was arranged by family, it was not a forced marriage—but I was a little girl
at the time, I did not know the meaning of marriage and accepted it because I did not know
any better. My husband was really harsh with me because of the fact that I did not know
what a marriage was, and what the duties of a wife were. He wanted a sexual relationship
but I did not even know what that was at the time, and so he started beating me to get it.
My hand was fractured, and also my eyes suffered injuries and were severely affected from
the beatings. Very early on in the marriage, I fell pregnant twice. Both children died due to
my extremely young age.
Aisha has experienced ongoing “mental health problems” because of her traumatic experience (Survival stories of life as a child bride, n.d.).
Fatima
Fatima is an 18-year-old woman from the western region of Sudan. She suffered from obstetric
fistula resulting from an obstructed labor at the age of 16. Since she lives in a nomadic
community and was not able to have prenatal care, she endured three days of painful labor
before her husband and father decided to seek medical help. She traveled for several hours on
a camel, but by the time they reached the hospital, the baby was already dead and the doctors
performed a cesarean section to remove the stillborn. Fatima was kept in the hospital for a few
days to recover, at which point she noticed that, in addition to not being able to walk due to
pain and numbness in her left leg, she was leaking urine continuously. Her doctor informed
her that she had developed an obstetric fistula as a result of the difficult labor and she would
need an operation to close the hole between her bladder and birth canal. Less than a month
after returning home, her husband divorced her because he could not stand the smell, leaving
Fatima shattered by the loss of her husband and first born. (Meet Fatima, n.d.)
Fatima had a fistula repair through the Fistula Foundation.
Nathi
Nathi was married at the age of 13 and two years later was pregnant with her first child. After
enduring a difficult labor, Nathi lost her baby and was left with obstetric fistula, incontinent
and leaking wastes. Her husband abandoned her, and soon after, her family did, too. At 15,
she was alone and scared. (Meet Nathi, n.d.)
Nathi also had a fistula repair through the Fistula Foundation. The organization has supported
fistula care in 29 countries in Africa and Asia, but many women with fistula remain to be treated.
▸
Treatment
The hypothetical case that follows presents a treatment plan, including both psychosocial care and
surgical treatments for a girl who suffered an OF in Niger. It describes the nurse’s role in the treatment of OF in a composite case.
Treatment
215
Makemba
Makemba, whose name means goddess, is a young girl in a small village in Eastern Niger. She
was married at the age of 12 and became pregnant with her first baby soon after turning 13.
Once she went into labor, she struggled to give birth at home without trained caregivers for
more than two days. When Makemba was finally taken to the hospital, it was too late; her
baby had died inside her. Soon after, she realized that her urine was flowing uncontrollably,
but she thought that was part of the normal delivery process and would eventually stop. When
the urine continued to leak and her husband tired of the constant odor, he sent her back to
her parents’ home. He never divorced her nor inquired about her well-being from that point
on. Makemba’s parents sent her to a fistula clinic in her country where she could live among
others with fistula throughout her surgery and post-operative recovery. She presented at the
clinic with clinical signs of depression and admitted to suicidal ideation.
The primary treatment of OF is to surgically repair the fistula and prevent further leakage so
that the girl can return to a normal life. However, the psychological effects of living with fistula are
profound and must be addressed. A nurse can play a significant role in educating a woman with
OF, providing social support, and helping her cope with the condition and recovery.
Psychosocial Considerations
Psychoeducation
Since cultural traditions might blame the girl for her failure to deliver a healthy infant, it is critical to educate her about the physiology of fistula and to help her understand that child brides frequently suffer stillbirth and fistula, and that it has nothing to do with her virtue. Providing teaching
materials in her language that explain the human body and anatomical models to show the risks of
labor with an immature pelvis may be useful. Connecting psychological symptoms she is experiencing (e.g., anxiety or depression) with the etiology of fistula is a useful application of psychoeducation. This education can be made culturally relevant by training women from the same culture
about OF to be interpreters. The primary message to Makemba should be: “This is not your fault.”
Social Support
One of the most powerful interventions for those who suffer from OF is peer support. No matter
how empathetic professionals might be or how well they learn their patients’ culture, they cannot offer the special bond that someone who has experienced the same problem offers when she
participates in the care of another. Such participants need not have worked through all the issues
for themselves. Nurses can be effective group leaders by organizing and operating peer support
group therapy. Meeting women who have successfully overcome fistula even if they have not
finished their treatment can be reassuring to women like Makemba who are new to the problem.
Peer support sends a clear message: “You are not alone.”
Providing Coping Mechanisms
Pads and adult diapers are not necessarily available in developing countries. One of the authors
interviewed a woman who was a member of an affluent American church group that made reusable
cloth pads for shipping to a fistula clinic in Africa. Simple interventions, such as providing pads,
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Chapter 18 Obstetric Fistula: The Cost to Child Brides
can be transformative for a woman with an OF if surgery is not available immediately. Organizing
a sewing circle to make pads for women waiting for a surgical repair of an OF can be a practical
intervention for both the OF survivors waiting for surgical services and for members of a community who wish to help.
Depression and anxiety often worsen when an individual has nothing to do with her time. Providing schooling, craftwork, or teaching new skills not only distracts from the problem but also
gives OF survivors new coping mechanisms for life after OF repair, especially if a woman has been
abandoned by her family and must learn to support herself.
Expressive Therapies
Western psychotherapy has limited use in cultures that do not believe in mental illness. However,
expressive therapies such as art and music therapy can be therapeutic on their own. Asking a patient
to draw a picture of her family or home, for example, might show how isolated she feels. The work
of art could then open a discussion about self-image or depression. It’s important to keep in mind
that the culture of the OF patient might not include a concept of depression as we know it but probably does include roles of women and men in families and how women feel about these roles. Asking Makemba to explain her drawing of herself lying prone in a thicket, for example, can lead to a
discussion of isolation and suicide ideation.
Family Therapy or Counseling
Although isolation of rural villages can be a barrier, educating families and communities about
OF can reverse the social isolation for girls who have experienced OF. While educating husbands
is ideal, it is not always possible. In Makemba’s case, her husband is unlikely reachable. Makemba’s
parents sent her to a clinic instead of simply disowning her as they might have done. So through
education, Makemba was restored to her place in her family.
The Role of the Nurse in Providing Psychosocial Support for OF
It is important that nurses provide passionate support and sensitive care throughout the repair
and recovery process. Many of these women have deep emotional issues related to their condition.
They are blamed for their foul smell and ostracized from their husbands and community. They
also must endure invasive, uncomfortable, and embarrassing exams throughout the process. Even
if they have a successful repair, these women need assistance with reintegration into their former
life (Lewis & de Bernis, 2006).
To further this reintegration, nursing interventions in partnership with community leaders can
include open discussions about the effects of child marriage on a community and the importance
of delaying childbirth until the girl is physiologically mature. Improving access to prenatal care and
medical care during childbirth is a community effort that nurses can facilitate.
Surgical Repairs
Wall (2006) estimates a single operation can cure approximately 90 percent of women with OF,
leaving them able to resume an active and fulfilling life, including further childbearing. However,
in some cases, the obstructed labor may have created multiple birth injuries. Obstructed labor that
causes vesicovaginal OFs can also cause total urethral loss, stress incontinence, renal failure, rectal
Conclusion
217
atresia, anal sphincter incontinence, cervical destruction, amenorrhea, pelvic inflammatory disease,
vaginal stenosis, and foot drop from nerve compression (Wall, 2006).
Repair Procedures
A small, recently formed vesicovaginal fistula may heal with the placement of an indwelling urinary
catheter, but most fistulas will require surgical repair. The surgical repair procedure can be performed
intervaginally or transabdominally, using the principles of fistula surgery. Fistula repair patients
typically stay in a hospital for 14–21 days with an indwelling urinary catheter. Before hospital discharge, a dye test is performed to assess successful closure of the fistula and urinary continence
status. Postsurgical observation includes documentation of either a successful closure with urinary
continence, a successful closure with urinary incontinence, or a failed closure (Kayondo et al., 2011).
Complications of fistula repair include failed closure and continued incontinence. Large vaginal fistulas raise the risk of such complications, as the level of vaginal scarring can be a significant
indicator of the outcome of fistula repair because scar tissue has decreased blood flow and ability to
heal. Urethral deterioration makes the repair more complicated and can lead to continued incontinence after surgery (Kayondo et al., 2011).
The Role of the Nurse in OF Surgical Repairs
Nurses can improve the outcome of surgery in several ways. First, skilled nurses can recognize the
symptoms of OF and make a proper referral to a fistula clinic. If the patient is already at a medical
facility, nurses can assist with maintaining the patient’s physical and emotional care (Ramsey &
Pinel, 2007). Maintaining cleanliness and adequate fluid and nutritional intake are within the nurse’s
role. Since malnutrition impairs healing, it must be addressed before surgical repair. The nurse’s role
in postoperative care is crucial (de Bernis, 2007). In the immediate postoperative period, nurses
should assess vital signs, observe for bleeding, monitor and maintain appropriate fluid intake and
urinary output, and manage the patient’s pain. In the later postoperative period, the nurse’s role
encompasses assistance with the return to mobility and maintaining an indwelling catheter for the
patient for up to 14 days, and observing for any potential complications from surgery, including
infection (Lewis & de Bernis, 2006).
▸
Conclusion
OFs are rarely seen in developed countries such as the United States, which has laws protecting young girls against sexual abuse and early marriage, a high standard of nutrition, and nearuniversal prenatal care with access to a highly skilled workforce. The majority of births in the
United States occur in hospitals where surgical intervention can be easily accessed should the need
arise. When labor progress becomes protracted, a physician performs a cesarean section before
tissue damage leading to OF occurs. It is important to understand the difference in resources
between developed and developing countries to understand the origin of the maternal birth
injury. It is also important to understand the cultural backgrounds of women who immigrate to
the industrialized world, many of whom are survivors of traumatic events that they endured in
their countries of origin. Nurses and doctors who attend medical missions or work within their
churches or other aid organizations treat health problems in healthcare settings far different from
those in developed countries.
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References
Alder, A. J., Ronsmans, C., Calvert, C., & Filippi, V. (2013). Estimating the prevalence of obstetric fistula: A systematic review
and meta-analysis. Biomedical Central Pregnancy and Childbirth, 13, 246. Retrieved from http://www.biomedcentral
.com/1471-2393/13/246
de Bernis, L. (2007). Issues in public health response: Obstetric fistula: Guiding principles for clinical management and
programme development, a new WHO guideline. International Journal of Gynecology and Obstetrics, 99(Suppl 1), s117–s121.
Kayondo, M., Wasswa, S., Kabakyenga, J., Mukiibi, N., Senkungu, J., Stentson, A., & Mukasa, P. (2011). Predictors and
outcomes of surgical repair of obstetric fistula at a regional referral hospital, Mbarara, Western Uganda. Biomedical
Central Urology, 11, 23. Retrieved from http://www.biomedcentral.com/1471-2490/11/23
Lewis, G., & de Bernis, L. (Eds.) (2006). Obstetric fistula: Guiding principles for clinical management and program
development. Geneva, Switzerland: World Health Organization.
Meet Fatima (n.d.). Retrieved from https://www.fistulafoundation.org/story/fatima/
Meet Nathi (n.d.). Retrieved from https://www.fistulafoundation.org/story/nathi/
Ramsey, K., & Pinel, A. (2007). Where urology and obstetrics meet: The campaign to end fistula. International Journal of
Urological Nursing, 1(1), 48–52.
Survival stories of life as a child bride (n.d.). Retrieved from http://www.news.com.au/world/survival-stories-of-life-as-a-child-bride
/story-fndir2ev-1226754035887
The Hope Organization. (2016, January 9). Retrieved from http://www.childbrides.org/
Unchained at Last. (2016, January 11). Retrieved from http://www.unchainedatlast.org/
U.S. Marriage Laws (2015, November 10). Retrieved from http://www.usmarriagelaws.com/search/united_states
/teen_marriage_laws/
Wall, L. (2006). Obstetric vesicovaginal fistula as an international public health problem. Lancet, 368(9542), 1201–1209.
Wall, L. (2012). A framework for analyzing the determinants of obstetric fistula formation. Studies in Family Planning,
43(4), 255–272.
CHAPTER 19
Caring for the Transgender
Community
Amy P. Roach
OBJECTIVES
At the end of this chapter, you will be able to:
1. Understand the health disparities within the transgender population.
2. Identify gender-related therapies (i.e., hormone replacement therapy and gender-confirming
surgeries).
3. Identify four strategies to promote open communication and acceptance with transgender
patients while assisting them to meet their healthcare needs.
▸
Introduction
More than 1.4 million people identify as transgender in the United States (Flores, Herman, Gates, &
Brown, 2016), with an estimated 25 million transgender people worldwide (Reisner et al., 2016).
This significant number of individuals who identify outside the gender binary of male and female
have special needs in the healthcare setting. Transgender individuals require individualized care
specific to their gender needs, such as hormone replacement therapy (HRT), gender-confirming
surgeries (GCS), and counseling (Redfern & Sinclair, 2014). While not all transgender individuals
will seek these treatment options, healthcare professionals will interact with individuals who do not
identify with their natal sex (i.e., sex assigned anatomically at birth), which will require sensitivity
and understanding of the individual’s experience on the part of the professional.
First, it is important to understand the difference between gender and sex before attempting to understand transgenderism. Gender is categorized by cultural and societal norms and roles
(Butler, 1990), and gender identities or expressions may coincide with a person’s natal sex (i.e., born
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
219
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Chapter 19 Caring for the Transgender Community
with male or female anatomy) or outside the gender binary. Gender identity is an individual’s internal self-concept, while gender expression is the external representation of a person’s gender identity (Human Rights Campaign, 2017). Those outside the gender binary (i.e., male and female) are
considered nonconforming to society’s constructs of gender expression (Hyderi, Angel, Madison,
Perry, & Hagshenas, 2016). However, in recent decades, gender expression has become more fluid
and less restricted to societal norms and heterosexist gender categories. Unfortunately for many
transgender people, society’s perspective of gender identity has not reached a level of understanding on nonbinary gender expressions, and that perspective is reflected in health and public policies (Stroumsa, 2014).
Gender-normative people identify with their natal sex and adhere to society’s categories and
roles associated with the expressed gender. Gender is seen as a spectrum with masculine and feminine expressions placed at opposite ends of the spectrum. While the majority of the U.S. population experiences gender based on their natal sex, gender nonnormative people (i.e., male-to-female
[MTF] or female-to-male [FTM] transgender, gender nonbinary, queer person) express their gender anywhere across the gender spectrum.
Second, there are multiple terms that are housed under the transgender umbrella that describe
different gender identities and expressions. Transgender people identify themselves in a way that
does not represent the socially expected man or woman (Merryfeather & Bruce, 2014). The other
terms used include transsexual, MTF transgender, FTM transgender, genderqueer, and gender nonnormative and/or nonconforming.
Transsexual people believe their body does not match their natal sex and may wish to utilize
HRT or surgical intervention to manipulate the body into the desired gender (Merryfeather & Bruce,
2014). However, the term transsexual is rarely used in modern society, and more appropriately used
terms include MTF transgender and FTM transgender.
An MTF transgender individual is born with a male anatomy but has a gender expression that
is female or on the feminine side of the gender spectrum. An FTM transgender individual is born
with a female anatomy but identifies as male or masculine. Gender nonconforming, genderqueer,
or gender nonbinary identities are those individuals who identify gender as a spectrum and may or
may not require medical intervention to reach their desired gender expression (Hyderi et al., 2016).
With a basic understanding of the concepts of gender, sex, and transgenderism, the following
text will describe the healthcare needs of the transgender population, health disparities this population faces, and implications for healthcare practice. Additionally, it will provide case studies that
will describe the experiences the transgender population faces within health care.
▸
Healthcare Needs of the Transgender Population
Utilizing the World Professional Association for Transgender Health (WPATH, 2011) Standards of
Care for the Health of Transsexual, Transgender, and Gender Nonconforming People, version 7 (SoC v7),
this text will give a brief overview of the transgender population’s healthcare needs. The treatments that will be covered here include HRT and GCS. Although it is beyond the scope of nursing
practice to prescribe or perform such treatments, it is important for nurses to be aware of a transgender patient’s needs and how to provide quality, evidence-based care.
Hormone Replacement Therapy
HRT includes feminizing (i.e., estrogen and anti-androgens) and masculinizing (i.e., testosterone)
hormones, and it depends on the patient’s gender identity in regard to which type the healthcare
Healthcare Needs of the Transgender Population
221
provider should prescribe. WPATH (2011) identifies criteria that the patient must meet before it
is appropriate for a healthcare provider to prescribe HRT. The criteria include documentation of
gender dysphoria that is persistent, the ability to give informed consent, being of consenting age,
and having all medical and mental health concerns well controlled (if applicable; WPATH, 2011).
An important aspect of HRT that should not be overlooked is the discussion of family planning before starting hormone therapy. Whether the individual is given estrogen or testosterone,
irreversible infertility can occur with long-term use of these medications. Therefore, it is imperative
for the healthcare practitioner to provide an open dialogue regarding family planning and patient
options. For instance, if the transgender individual desires to have children later in life, harvesting
(i.e., egg retrieval or sperm donation) will need to be implemented prior to HRT initiation. This
will allow the individual the option to have a family when ready.
The MTF transgender patient will begin to see physical changes on estrogen or anti-androgen
therapy (i.e., spironolactone or finasteride) a few months after initiation that result in breast growth,
decrease in libido and erections, skin softening and decreased oiliness, and thinning facial and
body hair (WPATH, 2011). The maximum effects will occur within 2 years of HRT; however, it is
the dosage, route, and medications used that will inevitability determine the hormone effectiveness (WPATH, 2011).
Similarly, the FTM transgender patient will see physical changes within a few months from
beginning testosterone therapy in areas of skin oiliness and acne, increased facial growth and muscle mass, and clitoral enlargement. These patients will also see maximum medication effects in
2 years from beginning therapy (WPATH, 2011).
There are no absolute contraindications for feminizing HRT (i.e., estrogen); however, there
are risks and preexisting conditions that could be exacerbated with the initiation of HRT. There is
an increased risk for cardiovascular disease, hypertension, and hypertriglyceridemia in the
use of feminizing hormones, so it is important to screen patients for these conditions prior to starting therapy and routinely assess for any signs or symptoms related to these conditions after therapy
has begun (WPATH, 2011). Also, if a patient has had a history of deep vein thrombosis (DVT) or
underlying hypercoagulable condition, estrogen may be contraindicated in this patient population
because it can increase a patient’s risk for developing a DVT. Last, the MTF transgender patient
should be assessed and monitored for elevated liver enzymes and hyperprolactinemia or prolactin
because there is an increased risk when on estrogen therapy (WPATH, 2011).
For FTM transgender patients, there are absolute contraindications when beginning testosterone therapy, which include pregnancy, unstable coronary artery disease, and polycythemia with
a hematocrit level greater than 55 percent and untreated (WPATH, 2011). Therefore, the patient
should be tested and assessed routinely for these conditions to ensure no complications arise while
on the medication.
It is important to discuss risks, benefits, patient goals in regard to transition, and family planning
prior to initiating HRT. Additionally, the prescribing provider will need to perform a thorough
health history and physical assessment before prescribing medications as well as continue monitoring laboratory values and assess for complications and desired changes after treatment has begun.
Gender-Confirming Surgeries
A transgender person may find it essential and medically necessary to undergo surgical procedures
to help correct gender dysphoria; however, not every transgender person will find this necessary. It is beyond the scope of this text to detail each surgical procedure that is available for
transgender individuals; however, it is important to understand the implications and care surrounding GCSs.
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Chapter 19 Caring for the Transgender Community
Briefly, an MTF transgender individual may seek to have a breast augmentation and surgical
reconstruction of the penis into a vagina (i.e., vaginoplasty). Likewise, an FTM transgender individual may wish to have a double mastectomy along with a reconstruction of the vagina and clitoris into a penis (i.e., phalloplasty). Genital surgery can be a risky and dangerous procedure for both
MTF and FTM transgender patients; furthermore, genital reconstruction surgeries are also a financial burden for the transgender person and are not currently covered by U.S. insurance providers
(Grant et al., 2011). Other surgeries that MTF patients may desire include cosmetic-type procedures, such as facial feminization surgery, liposuction, and thyroid cartilage reduction, and FTM
patients may desire pectoral implants and liposuction or lipofilling (WPATH, 2011).
Similar to HRT, GCSs require certain criteria to be met before a surgeon should ethically perform an irreversible surgery. Along with the same guidelines as HRT, the surgeon will also typically
require two referrals from a mental health professional and the prescribing physician for HRT that
the patient is in gender dysphoria and surgery is medically necessary before he or she will perform
genital surgery (i.e., hysterectomy, ovariectomy, and orchiectomy). Additionally, the patient must
have 12 consecutive months on HRT in order to confirm gender identity prior to irreversible surgical
procedures. Furthermore, if patients desire further genital surgery (i.e., phalloplasty or vaginoplasty),
they must live 12 continuous months in the gender role that matches their gender identity (WPATH,
2011). Surgeons may also request continuous care from a mental health professional.
Preventive Care
While the transgender patient’s prescribing provider, surgeon, and primary care provider will need
to monitor for complications and expected changes associated with HRT and GCS, they will also
need to ensure preventive care is being provided based on current practice and guidelines. Transgender patients will still need to be monitored for conditions such as heart disease, diabetes, and
cancer similar to their gender normative counterparts; however, there are areas of preventive
care that may be uncomfortable to discuss for both the provider and patient including the need
for mammograms, Papanicolaou (Pap) smears, and prostate examinations due to the sensitive
nature surrounding these tests. These tests may be performed on both MTF and FTM transgender patients and are dependent on where the patient is in their gender transition. For instance, an
MTF transgender patient who has had a breast augmentation but has not had a vaginoplasty will
need to have both a mammogram and prostate examination to assess for cancerous cells. Likewise,
an FTM transgender patient who has not had any surgical procedures will still need to have Pap
smears and mammograms. These conversations can be uncomfortable to have for both the healthcare practitioner and the patient; however, it is important for the care provider to overcome the
discomfort in order to best serve the patient.
▸
Health Disparities Among the Transgender
Population
There have been two large-scale quantitative studies in the United States that have outlined the
vulnerability of the transgender community. Both were conducted by the National Center for Transgender Equality, which is a social justice organization working toward equality for transgender individuals. Both surveys, one completed by Grant et al. (2011) and the other by James et al. (2016),
identified a variety of issues within the transgender experience, such as health care, education,
Health Disparities Among the Transgender Population
223
housing, and family life. These surveys are the largest of this kind and provided a wealth of statistical data that is useful when identifying factors associated to the transgender experience. An overview of the data will be outlined briefly in order to provide an understanding and connection to
the health disparities faced by the transgender population.
Overall, Grant et al. (2011) and James et al. (2016) found that transgender individuals have
difficulty accessing informed and quality health care in the United States. Grant et al. (2011) found
that 19 percent of 6,450 transgender participants were denied care from medical providers because
of their gender identity, and 50 percent had to educate providers on the care they needed. Similarly,
James et al. (2016) found 33 percent of 27,715 transgender participants who had seen a healthcare
provider in the last year had a negative experience (i.e., refused to be treated by the provider, harassed
or assaulted, or educated the provider on their own healthcare needs).
Comparably, other transgender-identified issues include homelessness, unemployment, inability to obtain proper identification, and inability to access public restrooms. James et al. (2016)
found that 30 percent had been homeless at some point, and only 16 percent owned their own
home. Homelessness can be attributed to the lack of employment transgender individuals face, and
many reported an inability to keep a job (13 percent) or to obtain a promotion (30 percent), or had
experienced mistreatment in the workplace (23 percent) owing to their gender identity. Additionally, transgender individuals value correct identification documents, such as driver’s licenses, school
records, and social security cards, yet only 11 percent stated having all their documents updated
to list their preferred name and gender (James et al., 2016). When these issues are combined with
high levels of violence, social isolation, and transphobic treatment from family, strangers, and service people (i.e., police, healthcare providers, etc.), transgender individuals face higher incidences
of fear and loneliness along with mental illness and high-risk behaviors (i.e., sexual or drug-related
behaviors; Grant et al., 2011; James et al., 2016).
The previously mentioned data relate to the variety of health disparities the transgender
population face, including mental illness, suicide, substance abuse, and high incidences of human
immunodeficiency virus (HIV) infection and sexually transmitted infections (STIs). First, James et al.
(2016) found that 39 percent of participants had experienced some form of psychological distress,
and many transgender individuals are diagnosed with depression and anxiety (Nordmarken, 2014).
Second, it was found that 40 percent of the James et al. (2016) survey participants had attempted
suicide in their lifetime, which is nine times higher than the national U.S. average (4.6 percent).
A large area of transgender research has investigated HIV and the transgender population
(Garofalo, Deleon, Osmer, Doll, & Harper, 2006; Nemoto, Operario, Keatley, Han, & Soma, 2004;
Sevelius, 2012). Multiple risk factors have placed transgender individuals at higher risk for contracting HIV infection than the cisgender population, including substance abuse, having multiple
sex partners, and participating in commercial sex work (Centers for Disease Control and Prevention, 2017). It has also been found that the majority of those transgender individuals living with
HIV are transgender women of color (19 percent are HIV+ black transgender women; James et al.,
2016). With the intersectionality of gender and race, transgender people of color experience not
only racism but also transphobia, both of which have been found to have harmful, long-lasting
effects on those suffering from it (Stryker, 2014).
This overview of statistical evidence and health disparities provides an understanding of the
issues faced by the transgender community along with the health-related effects that inadequate
health care and experiences of violence, discrimination, and bias may cause. With this basic understanding, the following section will provide an overview of how nursing practice can provide holistic,
quality care to improve these poor health outcomes and ensure transgender patients are receiving
the respect and care they deserve and need in healthcare settings.
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Chapter 19 Caring for the Transgender Community
Implications for Nursing Practice
Before this section outlines how nursing can help improve patient care along with the healthcare
experience for transgender individuals, it will present an overview of the challenges that transgender individuals face when seeking health care. There are a number of obstacles that healthcare professionals encounter when providing care for transgender patients. While there are many healthcare
providers who are uneducated in transgender health needs or who have biased or discriminatory
views toward transgender patients (Grant et al., 2011; James et al., 2016), beyond these systematic
issues are problems that can affect how care is provided on an everyday basis.
First, there is a lack of transgender specific data. While James et al. (2016) provided rich statistical data on the issues transgender individuals face, there is still more that needs to be understood, particularly in how to implement appropriate strategies to improve health outcomes in a
healthcare environment that does not acknowledge the treatment (i.e., HRT and GCS) as medically necessary (Stroumsa, 2014). Second, as it has been previously mentioned, financial burdens
can hinder a transgender individual from obtaining care. HRT and GCS are expensive therapies
that not all insurance policies will cover; therefore, the patient may opt to not receive these treatments or seek sources that are not ideal (i.e., black market HRT or GCS overseas). Third, there are
not enough outreach services or programs to connect transgender individuals with appropriate
and trained healthcare professionals.
When these issues arise for the transgender person, it makes accessing care difficult, and in
combination with stigma, bias, and discrimination, the feat of receiving quality care becomes a
greater challenge. Therefore, it is important for healthcare professionals, particularly nurses as a
frontline provider, to educate themselves on transgender health care, the health disparities within
this population, and strategies to improve health outcomes.
The role of the practicing nurse is to provide holistic, quality care using evidence-based
practice. It is important for the nurse to remain in touch with the needs of the patient populations
in his or her area of care and community, which the nurse can do by attending seminars, classes,
or conferences, and researching current trends and data through peer-reviewed publications,
as well as familiarizing him- or herself with the population’s basic needs and issues. These steps
should be universal for any patient population under a nurse’s care, not only the transgender
community.
More specifically to the transgender community, there are certain ways a nurse can introduce an environment of welcoming to allow for open communication and improve the transgender patient’s experience. I have spoken to many transgender individuals, who have identified four
key actions that can improve their experience in a healthcare setting: (1) be respectful, (2) use
the patient’s chosen name and pronoun, (3) simply ask the patient if the provider is unsure, and
(4) connect the patient to necessary care (i.e., endocrinologists, surgeons, therapists). While
these actions may seem straightforward, it is common for a transgender patient to experience
disrespect and uneducated providers in these areas when accessing care in the United States
(James et al., 2016).
First, a transgender patient deserves respect from all those providing care, from the front office
staff to the healthcare professionals. Transgender individuals experience disrespect in a variety of
ways including stares, whispers, or transphobic comments. These actions would make any patient
uncomfortable as well as resulting in hesitancy or hiding one’s gender identity or reason for visit
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during the health interaction. Additionally, it was found that those individuals who had negative
healthcare experiences were more likely to delay future care, even if it was life-threatening (Grant
et al., 2011; James et al., 2016). Therefore, it is important to treat all patients with respect regardless of their differences or gender identity.
Second, transgender people want to be addressed by their chosen name and pronoun. Many
patients will be incorrectly called by the pronoun of their natal sex or their given name. It is important to understand that a transgender person does not meet the socially expected norms and roles
of gender, and this results in the desire to change names and pronouns to match their gender identity and expression. Therefore, the nurse should be mindful of this and not make assumptions
regarding gender identity and expression based on how patients appear in person or in their medical documentation.
Third, at a transgender health conference, transgender participants discussed their experiences in health care with me, and many voiced the desire to be asked their preferences before their
healthcare provider made a mistake. To clarify, transgender patients would rather be asked what
their preferred name and pronouns are instead of being mistakenly called the wrong ones. It is
seen as more respectful by transgender patients for the healthcare professional to make the effort
to understand how the patient identifies than to make an irreversible error and potentially close
off communication.
Last, the nurse needs to act as an advocate by connecting the transgender patient to the appropriate specialists and care providers. While the generalist nurse may not be able to directly provide
the gender-specific treatments needed, he or she is able to identify resources, providers, and services that can aid patients in accessing the care they need. Therefore, the nurse will need to be
familiar with local organizations and healthcare providers that specialize in transgender health
care. Referring the patients to the appropriate physicians, surgeons, counselors, and more will help
the patient to create a supportive network of healthcare professionals who will aid in meeting the
patient’s gender-related health goals.
While these strategies do not necessarily revolve around how to prescribe or manage HRT and
other gender-related therapies, these guidelines, if utilized properly, will inevitably create an environment of openness and acceptance that will ease the transgender patient and lead to improved
access to care and health outcomes.
However, it is understood that the practicing nurse may want further knowledge on how to
care for the specific needs of the transgender population. Therefore, the following section outlines
organizations that have well-rounded websites that provide resources on transgender healthcare
needs and strategies to improve care. It is also suggested to identify local organizations that aim to
connect transgender patients to care in the area you practice in order to have resources available
for local transgender patients.
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■
■
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Helpful Resources
World Professional Association for Transgender Health: http://www.wpath.org
WPATH Standards of Care, version 7: https://www.wpath.org/publications/soc
National Center for Transgender Equality: http://www.transequality.org
Fenway Institute: http://fenwayhealth.org/the-fenway-institute
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Case Studies
CASE STUDY 191: TANYA
Tanya is a 36-year-old African American transgender woman. She currently is in debt due to several
facial feminization surgeries and recent loss of long-term employment with health insurance. While
she was steadily employed at an organization that was not discriminatory toward her gender identity,
Tanya was recently laid off from her job as the company experienced downsizing. The unexpected job
loss has caused Tanya to experience depression and anxiety related to her financial status and a loss of
purpose. She has withdrawn from her friend group and has not attended her volunteer duties at the
local transgender youth outreach program.
After a few weeks of withdrawal and unemployment, Tanya becomes sick with the flu. She opts
to go to an urgent care center to receive treatment that would take out-of-pocket payment. The nurse
who cares for Tanya treats her with respect and asks appropriate, non-prying questions. Tanya feels
comfortable opening up to her about her current situation and her emotional instability. The nurse
listens attentively and tells Tanya she will return shortly.
Upon her return, the nurse brings forms for Tanya to review regarding health insurance she can
apply for under the Affordable Care Act as well as a list of free and affordable counselors in her area.
Tanya is grateful for the assistance and states she will review the forms when she feels better.
Once Tanya’s health has improved, she decides to take advantage of the nurse’s kindness and
reviews the forms. Within them, she finds a free resource center that helps with insurance applications
and submissions. She calls and makes an appointment to secure health insurance. Additionally, she calls
one of the counselors to begin sessions to help her depression and anxiety. After completing these
tasks, Tanya feels empowered and decides to go back to the transgender outreach program to resume
her volunteer duties. The adolescents and staff have missed her, and they state they are currently
looking for an office manager to help maintain the files, influx of calls, and manage the office’s day-today tasks. While this position is not Tanya’s ideal job, she decides to apply in order to have an income
again. She receives the job and begins feeling better in regard to her life’s purpose.
Case Study Analysis
Tanya’s story may be familiar to many transgender women; however, not all resolve in a manner that is
positive. She was helped by one nurse who provided assistance so she could put her life back on track.
As the nurse, it is important to listen and advocate for the patient. The nurse in Tanya’s story identified
Tanya’s needs (i.e., counseling and health insurance coverage) and opted to take the additional time to
find resources to help her. With this assistance, it inevitability helped Tanya to feel empowered and take
control of her life again.
CASE STUDY 192: LIAM
Liam is a 23-year-old Caucasian transgender man who lives in an urban setting and works at a local
bookstore. He does not have health insurance and cannot afford testosterone injections. He suffers
from depression and suicidal ideations. He is teased and bullied by coworkers regarding his gender
identity and fears using the restroom at work. While his family is supportive of his gender identity and
expression, they live in another state and are only able to help financially in paying his car insurance.
Otherwise, Liam is independent.
Occasionally, Liam likes to visit a local gay club where many transgender men and women go to
socialize. He feels comfortable and welcomed there. During one visit, he uses the men’s restroom and
Case Studies
CASE STUDY 192: LIAM
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(continued)
finds a flyer for “cheap testosterone.” Liam is intrigued and takes down the number. The next day he calls
to request more information. It is being sold by a man who goes to Canada to acquire hormones for
local transgender individuals who cannot afford them. Liam is in desperate need to look more masculine
and stop the bullying at work, so he decides to order from this seller to begin officially transitioning
because he can actually afford the price offered. Although Liam has dressed, acted, and identified as
male, he has not received any treatment to transition because of financial reasons. The testosterone
injections arrive a week later, and Liam watches a YouTube video on how to perform self-injections.
Case Study Analysis
It is very common for transgender individuals to opt for black-market hormones because of a variety of
reasons. Due to Liam’s financial situation and emotional state, he felt his only option for a medical transition
was to obtain HRT from a stranger who had no medical background. The issues that come with this
scenario are bountiful. Transgender individuals do not know if the medication is the hormone they desire,
is in the dose that is needed, and has not been tampered with, which could cause more harm than good.
Transgender individuals may feel this is the only way to survive, meaning not being harmed by another or
causing harm to themselves, and will seek any option to look and feel the gender they desire.
CASE STUDY 193: BRITNEY
Britney is an 11-year-old transgender girl whose parents are accepting of her gender identity and
are working with physicians and counselors to ensure a smooth and safe transition. Britney has felt
female since she was 5 years old, and began wearing dresses and keeping her hair long at age 7. Her
parents have been supportive and encouraging but are hesitant about delaying Britney’s puberty with
medications. Britney wishes to take medications to stop male puberty and begin HRT using feminizing
hormones. This will ensure a more feminine appearance but will also cause Britney to be infertile. The
parents worry this will be detrimental for Britney later in life and are considering their options. The options
include allowing Britney to delay puberty and risk infertility, allowing male puberty to begin and continue
until sperm can be harvested for future family planning, or allowing male puberty to be completed and
beginning Britney on HRT when she is more mature and understands the ramifications entirely.
Britney’s parents have been open with her about these options, and Britney knows she wants to
delay puberty. She sees counselors and physicians who all give the same options and rationales, and
Britney remains steadfast. Her parents decide to allow her to begin puberty-delaying hormones and
HRT when the prescribing physician says it is time. Britney is very happy, and her parents, while happy
that Britney will be who she has also felt she is, are also worried about the long-term health outcomes
and future family planning issues that can occur because of the decision made.
Case Study Analysis
Similar to Tanya and Liam, Britney’s story is becoming more common among transgender children and
adolescents. With the progressing healthcare environment and available medications, transgender children
and their parents have options that were not available in the past. Additionally, the long-term health risks
and benefits are not entirely known with this newer line of treatment (i.e., puberty-delaying hormones).
Therefore, this makes the decision for many families difficult. It is unclear if the decision will negatively or
positively impact their child in the long run. This important decision inevitability is unique to each family,
the child or adolescent, and their situation. As a nurse, it is important to provide resources and information
for the family to make an informed decision that will benefit the child in the best way.
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Summary
You should now be more familiar and knowledgeable about the health disparities and the gender-related
healthcare needs, such as HRT and GCS, associated with the transgender patient population. While
the vulnerability of this population can be overwhelming for both patient and healthcare professional, it is important to remember to treat the patient with respect and identify ways to improve
the healthcare experience, such as being knowledgeable of the patient’s needs and problems as well
as how to connect the patient to more specialized care. This will help to improve the patient care
experience in a universally transgender-unfriendly healthcare system.
References
Butler, J. (1990). Gender trouble: Feminism and the subversion of identity. New York, NY: Routledge.
Centers for Disease Control and Prevention. (2017). HIV among transgender people. Retrieved from https://www.cdc.gov
/hiv/group/gender/transgender/index.html
Flores, A. R., Herman, J. L., Gates, G. J., & Brown, T. N. T. (2016). How many adults identify as transgender in the United
States? Los Angeles, CA: The Williams Institute.
Garofalo, R., Deleon, J., Osmer, E., Doll, M., & Harper, G. W. (2006). Overlooked, misunderstood, and at risk: Exploring
the lives and HIV risk of ethnic minority male-to-female transgender youth. Journal of Adolescent Health, 38, 230–236.
Grant, J. M., Mottet, L. A., Tanis, J., Harrison, J., Herman, J. L., & Keisling, M. (2011). Injustice at every turn: A report
of the national transgender discrimination survey, executive summary. Retrieved from http://www.thetaskforce.org
/static_html/ downloads/ reports/reports/ntds_summary.pdf
Human Rights Campaign. (2017). Glossary of terms. Retrieved from http://www.hrc.org/resources/glossary-of-terms
Hyderi, A., Angel, J., Madison, M., Perry, L. A., & Hagshenas, L. (2016). Transgender patients: Providing sensitive care. The
Journal of Family Practice, 65(7), 450–461. Retrieved from http://eds.b.ebscohost.com.proxy.kennesaw.edu/eds/pdfviewer
/pdfviewer?sid=d043125b-79d0-4c8d-ab1f-bc5496c29c38%40sessionmgr102&vid=2&hid=121
James, S. E., Herman, J. L., Rankin, S., Keisling, M., Mottet, L., & Anafi, M. (2016). The report of the 2015 U. S. transgender
survey. Retrieved from http://www.transequality.org/sites/ default/files/docs/usts/USTS%20Full%20Report%20-%20
FINAL%201.6.17.pdf
Merryfeather, L., & Bruce, A. (2014). The invisibility of gender diversity: Understanding transgender and transsexuality in
nursing literature. Nursing Forum, 49(2), 110–123.
Nemoto, T., Operario, D., Keatley, J., Han, L., & Soma, T. (2004). HIV risk behaviors among male-to-female transgender
persons of color in San Francisco. American Journal of Public Health, 94(7), 1193–1199.
Nordmarken, S. (2014). Microaggressions. Transgender Studies Quarterly, 1(1–2), 129–134. Retrieved from http://tsq
.dukejournals.org/content/1/1-2/129.full
Redfern, J. S., & Sinclair, B. (2014). Improving health care encounters and communication with transgender patients.
Journal of Communication in Healthcare, 7(1), 25–40.
Reisner, S. L., Poteat, T., Keatley, J., Cabral, M., Mothopeng, T., Dunham, E., . . . Baral, S. D. (2016). Global health burden
and needs of transgender populations: A review. The Lancet, 388, 412–436.
Sevelius, J. M. (2013). Gender affirmation: A framework for conceptualizing risk behavior among transgender women of
color. Sex Roles, 68, 675–689.
Stroumsa, D. (2014). The state of transgender health care: Policy, law, and medical frameworks. American Journal of Public
Health, 104(3), 31–38.
Stryker, S. (2014). Biopolitics. Transgender Studies Quarterly, 1(1–2), 38–41. Retrieved from http://tsq.dukejournals.org
/content/1/1-2/38.full
World Professional Association for Transgender Health. (2011). Standards of care for the health of transsexual, transgender,
and gender nonconforming people (version 7). Retrieved from https://www.wpath.org/publications/soc
CHAPTER 20
Developing
Population-Based Programs
for the Vulnerable
Anne Watson Bongiorno and Mary de Chesnay
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the relationship between planning and success when designing new programs to
serve the vulnerable.
2. Discuss the importance of stakeholders when proposing new programs.
3. Develop an idea for a new program that serves a vulnerable population.
▸
Introduction
Population-based programs can strengthen communities by increasing the amount of resources
available to promote social justice. This chapter focuses on how nurses can structure programs to
serve large numbers of vulnerable people. To maximize effectiveness, health professionals should
serve populations by using efficient and cost-effective methods to deliver programs that are based
on best practices within the program domain and encourage a continuum of care. We discuss the
importance of a common vision, the relationship between key planning elements and program
success, and creating partnerships with major stakeholders. We discuss how to design programs
to maximize their impact with scarce resources. This chapter covers the multiple components to
successful program planning.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Balancing Efficiency with Need and Effectiveness
In today’s healthcare environment, programs need to be of value, meet the needs of a population,
and flow through a continuous quality cycle of improvement that is efficient and effective. It is important to establish a consistent program approach. An appropriate analysis of need and evaluation of the program’s effect lead to improved efficiency and effectiveness of efforts. Concepts of
Lean Six Sigma involve just such a process, whereby the Lean concepts analyze need and effect,
while minimizing excess steps to an outcome (Eriksson, 2017). Six Sigma concepts lean examine by
what the target audience needs, recommending specific approaches to care, and creating a workflow to maximize the efforts’ effect. It is important that participative processes supplant authoritarian practices in healthcare management balancing the Lean with the cultural and creative needs
specific to your population of need. One way to explore this is to use value-stream mapping, a
graphic in which all stakeholders can examine the flow of materials and needs and reflect on proposed initiatives and changes (Tortorella et al., 2017). It is important that improvement processes
and sustainability be well analyzed.
▸
Focus of the Program
Problem Statement
The problem statement captures the significance of the health issue in relationship to the focus of the
program, clearly defines the purpose of the program, and identifies the population served by the
program. It is vital to analyze the environment and determinants of health; this process leads you to
a problem statement and plan that better predicts program success. The problem statement should
reflect what is important to both the target audience and major stakeholders, with all in agreement
on the proposed program focus (Newman & Covrig, 2013).
Stakeholders
Programs targeting vulnerable populations implicitly seek to reduce health disparities. The program planner needs to learn who the stakeholders are and how to identify them. Stakeholders are
representatives of the community engagement in the project and often function as the power brokers for the program. Stakeholders generally include nonprofit organizations or political entities
that can help establish and sustain the program; they also encompass individuals who are the program’s target (Issel, 2014).
Stakeholders should demonstrate diversity in their perspectives. For example, one of the authors of this chapter (Bongiorno) designed a service learning research study and practicum with
an international nonprofit group (non-governmental organization [NGO]) in La Carpio, Costa
Rica. The goal of this program was to establish a violence prevention project in the community.
The inaugural service learning project focused on raising awareness of violence in women and
children. Contact was made with a wide variety of stakeholders in La Carpio, including community members, key leaders in the barrio, and the NGO’s staff. In addition, focus group interviews were conducted to determine priorities for care with the women. Business leaders were
contacted about the proposed program, and many provided support. These efforts were designed
to gather a broad array of perspectives and to build a community-wide foundation of support for
reducing both personal and community violence.
Focus of the Program
231
Programs built with a broad stakeholder base clarify the values being espoused, the sociopolitical and economic factors at play, and the scientific merit of interventions that can make or break
a program. A cohesive stakeholder group develops synergy through the influence of its members
and empowers the group and its participants, a key tenant in Lean Six Sigma systems of care and a
surefire indicator of the program’s potential success (Elias, 2016).
Gatekeepers
Closely related to stakeholders are gatekeepers—those people who have power and authority, usually by way of their positions within the setting. They can use this authority in one of two ways: to
facilitate a project they support or to create barriers to those programs they do not support. It does
not matter whether the program is a service program or a study; gatekeepers need to be identified
early in the process. At this juncture, the use of metrics from research and politically and culturally competent acumen can be key strategies for engaging gatekeepers.
A positive example of gatekeepers was described in the first edition of this book, when the
second author and colleagues (Colvin, de Chesnay, Mercado, & Benavides, 2005) designed a research project in a barrio in Managua, Nicaragua. Early in the process of beginning the study on
mothers’ access to health care in the barrio, the research team met with a key community leader.
The woman who was the lead brigadista (community health worker) welcomed the team into her
home, where we described the study and planned how to approach the community. She gave the
researchers many helpful tips on the interview instrument, women to invite first, timing, and culturally appropriate incentives to participate in the study.
In contrast, a negative gatekeeper can effectively halt a program. Consider the doctoral student
who planned a study in which she would access a rural African American sample through a local
church. She obtained the permission of the pastor, who was enthusiastic in supporting her. When
she arrived for data collection, however, the student was told by the deacon that he had not given
his permission to collect data through the church and he would not allow her to enter. Inability to
resolve the power struggle between the pastor and the deacon cost the student months of work, in
that she needed to revise her entire methodology.
Values
The values section is a list of the core values held by the program designers. For example, for those
who work with vulnerable populations, a key value is social justice. The values section might include statements like the following examples:
For a program to reduce deaths from drug overdose: At least 90% of community members
should be trained to administer Narcan.
For a public education campaign to prevent HIV/AIDS: The public has a right to know
the risks of sharing needles.
Mission
The mission statement is an opportunity for the program designers to clearly say what they plan to
do and why they believe it is important. The following example is a mission statement for a prenatal program in Clinton County: Every expectant woman should have access to prenatal care throughout her pregnancy.
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Design Process
Recruiting the Team
A useful place to start designing a program is to obtain help from like-minded people who share
a concern about the issue and the population. It is very important to partner with members of the
community who the program will affect.
For example, the first author of this chapter (Bongiorno) partnered with a group of key public health personnel, industry and nurse leaders, legislators, and community members to address
chronic disease rates in the county. The Action for Health committee is addressing the built environment and access to quality health resources, such as grocery stores, pharmacies, and outdoor
activities. The current focus is on improving accessibility to the built environment for physical activity from childhood through senescence. As part of the initiative, public health nursing students
assessed use of local recreation paths and parks through tracker technology and use counts. They
also interviewed area residents about barriers to use. Findings included the fact that the recreation
path was well used by younger persons but that barriers existed for accessibility and safety of elders.
Next steps include partnering with the county recreation department to develop an elder-specific
walking group. Another group of students examined access to sidewalks by elders and those with
assistive devices. In a multipronged approach, we also helped create and promote a disc golf park
and free recreation, the Saranac River Trail. Representation from the group who are the program’s
recipients has been vital to the ongoing success of this project.
Feasibility Study
Proposed programs need to be realistic, be cost-effective, and have the potential to achieve predetermined goals. A feasibility study will define the skills and resources needed to implement a program
and offer alternative solutions. Needs and the proposed service are examined for practicality and
usefulness. The feasibility study highlights strengths and weaknesses of the proposal, and its capacity to deliver and sustain the program (Lestari et al., 2017).
The Saranac Trail initiative is a positive example of how a feasibility study supports potential
success of a program. An example in which feasibility was not well considered was a local health
department initiative designed to help increase healthy choices of children and their families. The
target audience consisted of children who were morbidly obese, but the program was open to any
interested family. Although the program was well grounded in theory and evidence, the collaborative project was unable to recruit sufficient families. Quite simply, parents were not ready to “label” their children obese. This example highlights how important it is to complete a feasibility study
when planning a new program.
Capturing Data
Informal talks and formal interviews may yield important data about a particular need in a community and often serve as the catalyst for action. For example, a tobacco prevention coalition had
a goal to decrease tobacco use in upstate New York. Part of its strategic work plan was to encourage women of low-socioeconomic status to access the statewide Quit Line. In an informal discussion, the director mentioned that few women in this target group from one particular county
accessed the Quit Line. A quick interview with the director resulted in a more systematic approach
to health communication in the organization. The director acknowledged that although the use of
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233
the materials fit the organizational goal, the current materials had not been formatively tested and
media outlets were not well researched. Because the key to effective health communication is to
understand the audience, the coalition developed a plan to test the usefulness of current products
and develop ideas for greater appeal and better placement of materials.
Surveys and focus groups provide rich data about a population problem from the emic point
of view. In the New York example, the coalition determined that with the new tobacco prevention
communication program, it needed to know how to strategically place messages that would attract
attention of women of low-socioeconomic status. Specifically, the coalition needed to know what
was and was not appealing in print media to this group. Nursing students used this opportunity to
develop a qualitative service learning project. They recruited community members to participate in
focus group discussions. Students developed a written survey and conducted anonymous curbside
surveys in places where the women congregated. Data showed that print information was at a reading level beyond the capabilities of the target group and did not resonate with the audience. New,
simplified outreach materials were then developed, tested, and placed in areas where the women
congregated—thereby bridging a gap in previous outreach efforts.
Participant observation is an important data-gathering technique because the data collected in
this manner are nonlinear, are contextual, and provide salient information about a problem whose
dimensions cannot be gleaned from quantitative methods. In the La Carpio research study and
practicum, nursing students used story and art, along with interviews and observation of participants. These methods revealed rich insight into how the experience reframed participants’ worldview regarding their vulnerability to poverty and violence. Qualitative analysis revealed important
information for program growth.
Good programs directed toward vulnerable populations are built on a foundation of evidence
that creates a compelling story of need, a gap in service, and the ability to develop an effective strategy to improve the population’s health. Hence, program planners must also elucidate the scientific
underpinnings for their proposal. The epidemiology of the health issue should be clearly and succinctly communicated. The cultural congruence of the program intervention needs to be addressed
when gathering data, as well as the bicultural diversity of the program recipients.
▸
A Business Plan
Definition and Role in Seeking Funding
Experienced grant writers know all too well that funding will be awarded only for ideas that are
feasible and sustainable. Funding agencies want to be assured that the grantee is functioning within
the limits of his or her ability and experience. The business plan is the document that provides
funding agencies with this kind of valuable information. A business plan is a vital tool in a grant
proposal to identify and prioritize the resources needed to implement the program (Papadopoulos, Britten, Hatcher, & Rainville, 2013). It highlights both the strengths and the weaknesses of the
proposal. In addition, it explains how the grantee will allocate resources to meet the current and
future program needs.
At a minimum, the business plan should define the program’s mission and goals and outline
how the grantee plans to conduct business to match the purpose of the program. Traditionally, the
business plan describes the program, product, and purpose, and discusses the market for the program now and in the future. The plan provides a detailed financial analysis, management plan, and
a personnel plan with dates and budget.
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Chapter 20 Developing Population-Based Programs for the Vulnerable
Business plans may range from simple to complex, depending on the scope of the program and
request for funding. For example, the first author (Bongiorno) and a colleague wanted students to
learn firsthand the role of advocacy for vulnerable populations. We developed a simple business
plan for the proposed program. The program’s mission was to increase nursing students’ awareness
of advocacy as a nursing mandate. Two objectives of the program were to relate the importance of
nursing’s voice in the advocacy process and to apply knowledge of the legislative process to a vulnerable population. Our market analysis showed a complete lack of knowledge regarding the role
of population-based advocacy among current students. Final steps in planning were to develop a
specific strategy and implementation plan to meet the program’s mission.
In the program, students spent a semester investigating a vulnerable population, learning the
legislative process, culminating with an advocacy presentation to their county legislator. The management team included faculty and administrators. The financial plan included a detailed budget of
costs to the university and students, and a projected cash flow from grants and other sources of funds.
Another example is that of the La Carpio research study and program. A business plan was
developed following a needs assessment. Bongiorno applied for and received a significant start-up
grant for the program. Sustainability was built into both the business plan and the grant application.
Costs and Budget
Anticipating costs is an important part of any business plan. Project financing should be identified,
including accountability and communication regarding costs, current and projected revenues, surplus, and deficits. It is critical to the success of any program in staying within its budget to project
the cash flow and create a balance sheet. Expenses, personnel costs, indirect costs, and issues such
as inflation or market adjustments need to be factored into more complex program plans. The proposed budget must realistically match the amount of funds a grant agency is willing to award. The
program developer’s vision of the program and budget must be realistically aligned for a funding
agency to consider the proposal. Matching ideas to funding is a vital element in grantsmanship.
Sources of Funding
People who believe strongly in the programs they develop can be quite creative at seeking funding. Grants and contracts serve as an excellent way to seek funding, although writing and submitting the grant can sometimes take several months. Grant directories are valuable resources in this
quest, as they detail the focus of the grant-sponsoring organization, contact information, guidelines for grant writing, and much other useful information.
Public campaigns can generate large amounts of money targeted to the program of interest. Sometimes it is possible to designate a program as a new United Way agency. If not, creating a similar public
campaign is not difficult if the team recruits the local media’s support. For example, the KSU Community Clinic Program is a nurse-managed clinic at Kennesaw State University under the WellStar College
of Health and Human Services and staffed by the WellStar School of Nursing. After the clinic received
favorable publicity in the local media during its new building dedication, KSU faculty and staff responded to requests for funding by asking that their Capital Campaign donations be designated for the
clinic. Walk-a-thons are another popular way of raising funds. Student nurses’ groups in many universities employ this method to raise money for their organizations or for health promotion awareness.
Grassroots fund-raising should not be overlooked if relatively small amounts of funds are needed.
Students often use bake sales and car washes to raise funds for airplane tickets to developing countries where they combine learning community health nursing with service. Formal dinners with
highly visible speakers combined with raffles can earn thousands of dollars if the right community
Examples
235
leaders are invited. For example, John Walsh (host of the America’s Most Wanted television program) agreed to be the featured guest at a fund-raiser for Prescott House, the Children’s Advocacy
Center in Jefferson County, Alabama.
▸
Evaluation
You can evaluate programs by using traditional research methods. Quantitative measures include
tools designed to collect stakeholder demographic data, such as surveys and questionnaires, to
identify the participants’ satisfaction. Qualitative measures for this purpose might include interviews and focus groups.
▸
Examples
Senior to Senior Program
Meadowbrook Healthcare of Plattsburgh, New York, partnered with the State University of New
York (SUNY) nursing faculty to launch a senior visiting program. All collaborators were partners
with the local Action for Health Committee.
The residents at Meadowbrook are well cared for but, with so many hours in the day, would
benefit from more cognitive stimulation. Senior nursing students needed an outlet to build confidence in working with patients with dementia. To address this need, a multiyear project was
planned that would be implemented by sequential cohorts of preselected senior-level nursing students. Stakeholders were identified, including workers from all shifts, senior management, the local
healthcare staff, and public health representatives. Nursing students worked with staff and residents
in a semester-long visiting program. Each week, students would select activities and goals to work
on with their assigned resident. The only nursing care provided was communication and visiting.
The nursing students met multiple times with the faculty and the agency leadership to establish a
common purpose and focus for the program. Initial goals were to develop a common set of shortand long-term objectives and establish mission and vision statements. A needs assessment was
conducted, laying the groundwork for a sustainable program. Results of the needs assessment indicated that residents had large swaths of the day when little cognitive stimulation occurred. Nursing students lacked initiative and self-confidence in approaching a patient without a physical task
to complete. The idea was that residents would benefit from an increased quality of life and nursing students would improve their readiness to better communicate with patients and would build
self-esteem. Nursing students are currently in their fifth year of this program, and sustainability
has been established. Long-term goals will be to pair senior students with freshman or sophomore
students in the future.
Prescott House
In the mid-1980s, the second author of this chapter (de Chesnay) was involved in working with the
district attorney to set up a children’s advocacy center in Jefferson County, Alabama (de Chesnay &
Petro, 1989). The intention of this program was to reduce further victimization of child sex abuse
survivors through the criminal justice system and to improve prosecution rates of offenders. The
team had been concerned about the extreme emotional distress experienced by children and their
nonoffending family members as prosecution of the offenders proceeded through the slow-moving
236
Chapter 20 Developing Population-Based Programs for the Vulnerable
justice system. Grant funds became available for a project to model a center after one that had been
started by the district attorney in Huntsville, Alabama.
To assess the need for such a program in Jefferson County, the team conducted interviews with
a variety of stakeholders. The most powerful finding from this research was that children were required to tell their stories over and over to many professionals in intimidating circumstances, such
as in police stations and courthouses with big, adult furniture. The short-term goal was to require
all individuals who needed to interview children to find a quiet, private place; the long-term goal
was to create a new space with age-appropriate furniture and anatomically correct dolls.
On a short-term basis, the team designated a quiet space in the police station that was equipped
with smaller furniture for children. Dolls and coloring materials were brought to the room to enhance the interviews. All interviewers came to the child. The effectiveness of this plan was limited,
however, in that the child still needed to tell the story many times. With each subsequent telling of
the story, many children became confused or numb and the story sounded false.
The long-term solution was to acquire a building that would be dedicated to interviewing the
children. Funds were raised through private donations, and the house was named Prescott House
in honor of the local citizen who donated the building. Prescott House is located away from the
courthouse, in a residential neighborhood. The former residential space was renovated to accommodate a large conference room upstairs with age-appropriate interview rooms for young children
and adolescents. The arrangement of rooms with closed-circuit television enables the child to be
in the interview room with one interviewer who wears an earpiece. All other professionals are required to watch from the conference room and feed their questions to the interviewer.
The Hope Box
Within the context of teaching a course in community engagement for honors students, the second
author (de Chesnay) met with the founders of The Hope Box, an innovative program addressing
the issue of infant abandonment. They are two mothers who have great empathy for young women
(children themselves) who feel so desperate that they leave their infants in unsafe places. Rather
than judging these kids, the women decided to create a program of service and community action
to provide a safe place for the children. At this writing, they have managed to change the Georgia
Safe Haven law to make it easier for women to access a safe place. Through the course, an honors
nursing student (Giganti) worked closely with the Hope Box staff to develop a program of external funding. Her work is described in Chapter 31 of this edition.
▸
Summary
This chapter has offered some basic ideas about program development. Nurses are in a unique
position to provide such programs for vulnerable populations, and the following chapters offer examples of the fine work they do. With appropriate planning and involvement by stakeholders, programs at the local level can make great contributions to their communities.
References
Eriksson, N. (2017). Hospital management from a high reliability organizational change perspective: A Swedish case on
Lean and Six Sigma. International Journal of Public Sector Management, 30(1), 67–84.
Colvin, S., de Chesnay, M., Mercado, T., & Benavides, C. (2005). Child health in a barrio of Managua. In M. de Chesnay
(Ed.), Caring for the vulnerable: Perspectives in nursing theory, practice, and research (pp. 161–170). Sudbury, MA: Jones
and Bartlett.
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De Chesnay, M., & Petro, L. (1989). The accountability of incest offenders. Medicine and Law, 8, 281–286.
Elias, A. A. (2016). Stakeholder analysis for Lean Six Sigma project management. International Journal of Lean Six Sigma,
7(4), 394–405.
Issel, L. M. (2014). Health program planning and evaluation: A practical, systematic approach for community health (3rd ed.).
Burlington, MA: Jones & Bartlett.
Lestari, B. W., Arisanti, N., Siregar, A., Sihaloho, E., Budiman, G., Hill, P., & McAllister, S. (2017). Feasibility study
of strengthening the public–private partnership for tuberculosis case detection in Bandung City, Indonesia. Biomedical
Central Journal Research Notes, 10, 404–410. doi.org/10.1186/s13104-017-2701-y
Newman, I., & Covrig, D. (2013). Building consistency between title, problem statement, purpose and research questions to
improve the quality of research plans and reports. New Horizons in Adult Education & Human Resource Development,
25(1), 70–79.
Papadopoulos, A., Britten, N., Hatcher, M., & Rainville, K. (2013). Using a business plan development as a capstone project
for MPH programs in Canada: Validation through the student perspective. Journal of Community Health, 38(5), 791–798.
Tortorella, G., Fogliatto, S., Anzanello, M., Marodin, G., Garcia, M., & Esteves, R. (2017). Making the value flow: Application
of value stream mapping in a Brazilian public healthcare organization. Total Quality Management and Business Excellence,
28(13), 1544–1558.
CHAPTER 21
The Hepatitis C Epidemic:
Outreach and Intervention
for Boomers
Gregory Grevera and Karen Hande
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the current state of the hepatitis C epidemic transmission.
2. Explain why baby boomers are a vulnerable population.
3. Discuss outreach strategies to address this population.
▸
Introduction
Viral hepatitis is the most common chronic blood-borne pathogen in the world (World Hepatitis
Alliance, 2017). It is a leading cause of infectious disease death globally, accounting for more than
1.3 million deaths per year, comparable to tuberculosis, malaria, and HIV/AIDS (World Hepatitis Alliance, 2017). Since 2000, deaths from viral hepatitis have increased globally by 22 percent
(Center for Infectious Disease Research and Policy, 2017). One goal from the 69th World Health
Assembly in Geneva is the elimination of viral hepatitis B and C by the year 2030 (World Health
Organization [WHO], 2017).
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
239
240
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Chapter 21 The Hepatitis C Epidemic: Outreach and Intervention for Boomers
Hepatitis C in the United States
Incidence and Prevalence
According to Moyer (2013), hepatitis C virus (HCV) is the most common chronic blood-borne
pathogen in the United States and a leading cause of complications from chronic liver disease.
Chronic HCV infection can cause fibrosis of the liver, cirrhosis, and hepatocellular carcinoma
(Viner, Kuncio, Newbern, & Johnson, 2014).
In the United States, approximately 2.3 to 5.2 million people are living with a chronic HCV
infection (Chak, Talal, Sherman, Schiff, & Saab, 2011; Ditah et al., 2013). Among those infected,
45 to 85 percent are unaware that they are infected (Ngo-Metzger, Ward, & Valdiserri, 2013). Because of inadequate screening, many people infected with HCV have not been identified, hindering the public health system in accurately estimating HCV burden and disease transmission (Viner
et al., 2014). Because the acute infection is asymptomatic in 60 to 70 percent of persons with undiagnosed hepatitis C, infections may have increased HCV-related morbidity and mortality risks
(Ngo-Metzger et al., 2013). Diagnosis requires screening at-risk populations.
The categories of high risk include:
■
■
■
■
■
■
■
■
■
■
Injection drug users
Intranasal drug users
Blood transfusion recipients
Persons with solid organ transplants before 1992
Clotting factor recipients before 1987
Long-term hemodialysis clients
Recipients of unregulated tattoos
Persons with HIV infection
Persons with known exposure to HCV
Children born to mothers with chronic HCV infection (Moyer, 2013; Viner et al., 2014)
Baby Boomers’ Risk for Hepatitis C
People born between 1945 and 1965, the “baby boomers” (CNN, 2016), account for approximately
three-fourths of people infected with HCV (Ditah et al., 2013). Because of the uptick in post–World
War II births, the term baby boomers has been used to describe the population of people born during
this time period. Some suggest that the baby boomer era may have begun as early as 1943 and includes those born throughout 1965 (American Association for the Study of Liver Disease [AASLD],
2016; Chou, Cottrell, Wasson, Rahman, & Guise 2013; Moradpour, Grakoui, & Manns, 2016). As
of 2015, the number of baby boomers ranged from 74.9 to 82.3 million, depending on when you
count the first year of this boom (1943 or 1946). Epidemiological analyses indicated that this birth
cohort is significantly and independently associated with being infected with HCV (Alcorn, 2013).
Adults born in the baby-boomer cohort are more likely to be diagnosed with HCV infection because they frequently have a history of the risk factors.
The Burdens of Hepatitis C
Hepatitis C is associated with many burdens, including the cost of treatment and the economic consequences of delayed or no treatment (U.S. Department of Health and Human Services [DHHS], 2014).
The healthcare costs over a lifetime of a person living with HCV can total hundreds of thousands of
dollars (Institute of Medicine [IOM], 2010). Among persons enrolled in managed care, clients with
Intervention
241
HCV infection are hospitalized more frequently than other clients of similar demographic profile
(24 percent for HCV+ clients versus 7 percent for non-HCV+ clients) (Su, Brook, Kleinman, &
Corey-Lisle, 2010). A study of about 340,000 workers in the United States revealed that employees
with HCV infection had significantly more lost workdays than other employees (Su et al., 2010).
▸
Intervention
Screening
The largest barrier to treating hepatitis C is the lack of awareness among infected persons (Ly et al.,
2012). Numerous studies describe the need for a one-time HCV screening for baby boomers because approximately 70 percent of all U.S. persons with HCV infection were born in that cohort
(Ly et al., 2012; Mahajan, Liu, Klevens, & Holmberg, 2013; Southern et al., 2011). This age cohort,
with years of exposure to HCV risk factors, has five times the risk of HCV infection compared to
other groups (Rashrash, Maneno, Wutoh, Ettienne, & Daftary, 2017). For this reason, in 2013 the
U.S. Preventive Services Task Force (USPSTF) issued a Grade B recommendation to offer one-time
HCV screening for all individuals in the U.S. population born between 1945 and 1965 (Moyer,
2013). A Grade B recommendation describes an action that has “high certainty that the net benefit is moderate to substantial” (Moyer, 2013, p. 358).
Despite this recommendation and the increased risk of HCV infection in baby boomers, screening has marginally increased. Between 2013 and 2015, screening the baby boomer cohort has increased from 12.3 to 13.8 percent (Jemal & Fedewa, 2017). One of the reasons for the overall slow
uptake of screening may be a lack of provider awareness of the USPSTF guidelines (Moyer, 2013).
Healthcare providers have the responsibility to follow USPSTF guidelines, as set forth by the Centers
for Disease Control and Prevention (CDC); yet most providers do not screen all baby-boomer clients
for HCV. Providers need education about HCV screening in this birth cohort (Clark & Muir, 2012).
Treatment
Hepatitis C therapy can lead to a sustained virologic response (SVR) of greater than 95 percent
(Backus, et al., 2011). An SVR is defined as having no measurable HCV in the blood 12 or more
weeks after completion of therapy (U.S. Department of Veterans Affairs, 2015). Considered a cure,
SVR has been shown to decrease liver-related morbidity and mortality, as well as deaths due to all
causes in individuals with chronic HCV infection (Backus et al., 2011).
Treatment for HCV infection is becoming more efficacious and tolerable owing to the development of direct-acting antivirals (DAA; Alexopoulou & Karayiannis, 2015). Eleven new single
agent or fixed dose combinations for the treatment of hepatitis C have been approved since 2011
(American Liver Foundation, 2017). In addition to the three DAAs currently on the market in the
United States, additional DAAs will be available in a few years (Smith, 2014). Treating clients for
HCV infection will prevent the advancement to fibrosis, cirrhosis, and hepatocellular carcinoma
(Morgan et al., 2013).
Millions of Americans infected with chronic HCV could benefit from these new drugs, yet
the shortage of healthcare providers and the lack of education about hepatitis C treatment are barriers to care (Smith, 2014). Many clients diagnosed with HCV infection by primary care providers
in rural communities must be referred out of their communities to sites that offer adequate treatment. Although the cost of treatment is expensive, it is still more cost effective than managing endstage liver disease, hepatocellular carcinoma, and liver transplantation (Institute for Clinical and
Economic Review, 2014).
242
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Chapter 21 The Hepatitis C Epidemic: Outreach and Intervention for Boomers
Prevention and Community Outreach
In 2011, the DHHS released the IOM 3-year Action Plan for the Prevention, Care, and Treatment of
Viral Hepatitis (2014). The report identified viral hepatitis as an underappreciated health concern
for the nation. One of the main IOM recommendations was to “set forth action to improve viral
hepatitis prevention and ensure that infected persons are identified and provided care and treatment” (DHHS, 2014, p. 6).
Trends in Hepatitis C Outreach
The DHHS (2014) has identified six emerging trends and opportunities for addressing viral
hepatitis:
1.
2.
3.
4.
5.
6.
Growing awareness among disproportionately affected populations
Hepatitis C treatment advances
HCV testing advances
Attention to the growing trend of HCV infection among young people who inject drugs
Advances in the science of viral hepatitis
Opportunities arising from the Affordable Care Act
The DHHS (2014) supports the CDC and the USPSTF guidelines for the one-time screening of
those born between 1945 and 1965. Advancing this awareness among this population in the United
States, and the providers that serve them, will continue to be an important aspect of this renewed
national plan. As knowledge of viral hepatitis increases, and treatment options for hepatitis C are
more efficacious and tolerable, policies and evidence-based practice to improve the frequency, availability, and acceptability of HCV testing must be implemented (DHHS, 2014).
Healthcare Provider Education
Opportunities for healthcare providers (HCPs) to screen baby boomers for HCV abound. These
include primary care and specialty clinics, emergency departments, and hospitalized clients. One
of the reasons discussed for the overall slow uptake of screening may be providers’ lack of awareness of the USPSTF guidelines (Moyer, 2013). Providers need education about HCV screening in
this birth cohort (Clark & Muir, 2012; CDC, 2018).
Community-Based Research
A prospective cohort study among clients seen in four urban primary care clinics tried to determine
the actual HCV testing rate among clients with HCV risk factors and identify variables predictive of
testing. At the initial visit to the HCP, individuals were given a questionnaire that listed HCV risk factors and were asked to check if they had a risk factor. Those who acknowledged at least one risk factor were offered subsequent HCV testing. Of 578 individuals who identified a risk, only 46 out of the
578 (8 percent) were tested for HCV within 2 months of their initial visit. Of those tested 5 out of 46
(11 percent) had a positive HCV antibody. In this study, 92 percent of individuals with an HCV risk
factor were not tested for HCV in the primary care setting (Almario, Vega, Trooskin, & Navarro, 2012).
In another prospective study of two primary care practices in the Northeast between November 2013 and November 2015, multifaceted interventions were implemented to increase
HCV screening. These included electronic alerts, house staff education, data feedback, and client
Case Studies
243
navigation. Out of 4,419 baby boomers newly screened, there was an HCV seropositivity rate of
3.3 percent (Goel et al., 2017).
A prospective cohort of 6,140 baby boomers admitted to a south Texas hospital between
December 2012 and January 2014 were screened for HCV. Of the 3,168 eligible clients, 240
(7.6 percent) had positive HCV antibodies. This inpatient screening program yielded a chronic
HCV infection rate of 4.2 percent (Turner et al., 2015).
Southern et al. (2011) showed an overall 7.7 percent prevalence of HCV infection in three
community-based primary care clinics. They found a very high estimated prevalence of HCV infection in urban client populations with risk factors. Providers use risk-based screening strategies, and
over 73 percent of HCV positive clients were born in the baby-boomer cohort. Nonetheless, knowledge regarding HCV risk factors and risk for HCV contraction were low (Southern et al., 2011).
In one urban academic emergency department setting, based on an 11-week screening of all
baby boomers entering the system, there was unrecognized HCV antibody (Ab) reactivity in one
out of nine baby boomers, nearly four times greater than previous estimates for this population
(Galbraith et al., 2015).
Brady et al. (2017) compared three randomized trials, between December 2012 and March
2014, in primary care settings screening baby boomers for HCV. Three interventions in each trial
were implemented:
■
■
■
Repeated mailings
An electronic health record (EHR) best practice alert
Direct client solicitation
All three trials, compared to standard of care/risk-based assessment, resulted in a substantially
higher HCV testing compared with risk-based assessment (26.9 percent versus 0.4 percent for repeated mailings, 30.9 percent versus 3.6 percent for EHR alert, and 63.5 percent versus 2.0 percent
for direct client solicitation; Brady et al., 2017).
▸
Case Studies
CASE STUDY 211: EDUCATING THE HEALTH
PROVIDER ON HCV
Thomas is a 58-year-old Caucasian man who was born in 1958. He sees his primary care nurse
practitioner (NP) on a biannual basis for routine health care and physicals. His only medications are a
beta-blocker and a diuretic for mild hypertension. He has a past medical history of melanoma. He is a
moderate drinker and denies any illicit drug use. He is in good physical and mental health. He also has
a history of multiple male and female sex partners and gets an annual screening for HIV. During his well
visit, he expressed his desire to be screened for HCV. During his most recent visit, the NP asked about
his history of risky behaviors that might put him at a higher risk for HCV, including blood transfusion,
blood products, organ donations prior to June 1992; accidental needle sticks; injection drug use;
history of sexually transmitted infections; any tattoos or body piercings; and history of snorting drugs
or using shared equipment. Thomas denies these high-risk behaviors and claims to only have “safe” sex.
The NP tells Thomas that he “looks normal and so an HCV screen is not warranted.” Thomas
asks what the NP means by “normal” and is told that his liver function studies over the years have
(continues)
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Chapter 21 The Hepatitis C Epidemic: Outreach and Intervention for Boomers
CASE STUDY 211: EDUCATING THE HEALTH
PROVIDER ON HCV
(continued)
consistently been within normal limits, thereby showing no signs of liver dysfunction or HCV. Thomas
states that he has seen commercials during a Sunday morning news program suggesting that all
persons born between 1945 and 1965 should be tested for HCV. He then asks the NP how long would
it take for liver function tests to become abnormal if he might have been infected years ago. The NP
asks him to clarify the question. Thomas asks the NP what she was doing in 1980. The NP states she
was in college. He states that he, too, was in college at that time but had to drop out a semester due
to “partying too hard during my sophomore year.” He goes on to define partying as getting “so drunk,
high, and stoned that I don’t remember much of that semester.” The NP asked if he may have injected
or snorted drugs while sharing equipment. He responded positively that “everybody was doing it then.”
The NP agrees to order the HCV screen.
Thomas’s screening results were negative. The NP informs him she has reviewed the CDC HCV
screening guidelines for baby boomers and brought it to the attention of the staff. All the providers
agree that HCV screening of all baby boomers and those at high risk should be done. It is included in
the screening section of the electronic medical record.
The NP calls Thomas 4 months later to report that, because of the discussion surrounding his HCV
screening, the providers in the office had begun routine screening and had identified and referred
three HCV+ patients, all with no known high-risk behaviors.
CASE STUDY 212: THE INSIDIOUS NATURE OF HCV
Angelica is a 52-year-old Filipina woman, born in 1952. She is scheduled for a visit with her provider
for nonspecific fatigue and body aches. She has no significant past medical history. She is the mother
of three adult children, born in 1982, 1985, and 1990. Her vital signs are within normal limits and she
is in no apparent distress. She has not traveled outside the United States in over a decade. She denies
any current history of alcohol consumption or illicit drug use. A review of systems, lab tests, and a
physical examination rules out probable causes for her complaints including lack of exercise, Lyme
disease, type 2 diabetes, stress, sleep apnea, medication side effects, anemia, meningitis, acute/chronic
kidney disease, dietary changes, depression, hyperthyroidism, congestive heart failure, myelodysplastic
syndrome, vitamin B12 deficiency, or withdrawal from caffeine/alcohol/illicit drugs. All laboratory
studies come back within normal limits, except for elevated alanine aminotransferase and aspartate
aminotransferase.
The provider orders the following screening labs: HIV antibody, hepatitis B surface antigen, and
HCV antibody. The HIV and HBV screens come back negative. The HCV antibody test is positive and
a follow-up HCV RNA PCR (polymerase chain reaction) is performed with a high HCV viral load of
1,215,422 IU/L. Angelica is diagnosed with hepatitis C.
How did Angelica contract HCV? HCV infection is insidious and can lie dormant for decades. In
1990, with her third child, Angelica gave birth by cesarean section. Her blood volume was replaced with
packed red blood cells. Blood products were not screened for HCV prior to June 1992. Most likely this
was the route of transmission. Angelica was referred to an NP who specializes in hepatitis C treatment.
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July 31, 2017 from https://www.hepatitis.va.gov/pdf/sustained-virological-response.pdf
Viner, K., Kuncio, D., Newbern, C., & Johnson C. C. (2014). The continuum of hepatitis C testing and care. Hepatology,
61(3), 783–789.
World Health Organization. (2017). Global health sector strategy on viral hepatitis, 2016–2021. Retrieved from http://www
.who.int/hepatitis/strategy2016-2021/portal/en/
World Hepatitis Alliance. (2017). What is world hepatitis day? Retrieved from http://www.worldhepatitisday.org/en/about-us
CHAPTER 22
Trauma-Informed Primary
Care: Promoting Change
Among Patients with Early
Life Adversity
Tracey Wiese
OBJECTIVES
At the end of this chapter, the reader will be able to:
1. Explain the pathophysiology that occurs within the brain and body after exposure to toxic,
chronic stress loads.
2. Describe the individual, familial, community, and systemic effects of toxic stress load and its
subsequent sequelae.
3. Identify evidence-based interventions for addressing individuals, families, and communities that
have been affected by toxic stress.
▸
Introduction
Primary care providers (PCPs) need to be aware of traumatic events among their patients that
increase vulnerability, most notably, abuse in childhood. Childhood abuse and neglect cross
all racial, ethnic, and socioeconomic lines and no patient demographic is immune to the longterm negative sequelae of adversity. Medical, social, and genetic sciences have unequivocally linked
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Chapter 22 Trauma-Informed Primary Care: Promoting Change Among Patients
childhood adversity with negative social, emotional, and physical health consequences later in life
(American Academy of Pediatrics [AAP], 2012; Balistreri, 2015; Danese et al., 2009; Fang, Brown,
Florence, & Mercy, 2012; Felitti, 2002; Oral et al., 2016; Kerker et al., 2015; Schussler-Fiorenza, Xie,
& Stineman, 2014; Szilagyi & Halfon, 2015).
Conducting a trauma history is a primary care function, a pertinent piece of the diagnostic
puzzle. It should not be limited to the therapist’s or psychiatric provider’s office. Failure to include
this portion in the history may contribute to poor health outcomes and disengagement by the patient in the healthcare setting. Trauma-informed care is described as an approach that recognizes
and responds to trauma with treatment (The Trauma Informed Care Project, 2017). The PCP needs
to understand the effects of toxic stress on the body (Oral et al., 2016), the epigenetic and neurologic sequelae, and culturally appropriate approaches.
▸
Toxic Stress
Adverse Childhood Experiences
Multiple studies demonstrate a link between child maltreatment and a substantially increased risk
for negative health outcomes throughout the life span. According to Felitti (2002), adverse childhood experiences (ACEs) are the most important determinant of health and social well-being in
the United States. The original ACEs study (n = 17,000) highlighted the most common types of
adverse experiences:
■
■
■
Emotional, physical or sexual abuse
Neglect—emotional and physical
Household dysfunction—domestic violence, substance abuse, mental illness, criminal activity,
or parental absence (Felitti, 2002)
Effects of Toxic Stress
Adverse childhood experiences result in organic disease, neurobiological and genetic changes,
and maladaptive changes, both structurally and functionally in the brain (AAP, 2012; Balistreri,
2015; Danese et al., 2009; Fang et al., 2012; Felitti, 2002; Kerker et al., 2015; Oral et al., 2016;
Schussler-Fiorenza et al., 2014; Szilagyi & Halfon, 2015). Negative health outcomes among persons
with ACEs include impaired brain development and cognitive difficulties, poor physical health,
disability, suicide, drug abuse, sexual risk taking, and early death from the leading causes of death,
including obesity (AAP, 2012; Balistreri, 2015; Danese et al., 2009; Fang et al., 2012; Felitti, 2002;
Kerker et al., 2015; Oral et al., 2016; Schussler-Fiorenza et al., 2014; Szilagyi & Halfon, 2015). In
addition, there is an increased risk for delinquency, adult criminality, violent behavior, and social
difficulties, and a decreased quality of life (Fang et al., 2012; Schussler-Fiorenza et al., 2014). The
more a child is exposed to ACEs, the higher the risk for toxic stress (Felitti, 2002; Kerker et al.,
2015). A history of ACEs, while directly germane to the practice of primary health care at all ages,
is often not obtained (Felitti, 2002).
Healthy Response
Everyone experiences stress in his or her lifetime, mediated by physical, neurological, environmental,
or genetic factors. Any of these factors can alter homeostasis, activating the neurological stress response and affecting subsequent behavior. Positive stress is vital for healthy growth and development,
Toxic Stress
249
to acquire coping skills and to build resiliency (Purewal et al., 2016). Activation of the hypothalamicpituitary-adrenal (HPA) axis sets off a cascade of neurological, endocrinological, and hormonal effects (Oral et al., 2016). These physiological responses soon diminish as the stressor is eliminated,
or in situations in which stressors are great or occur over an extended period, a tolerable stress response will develop (AAP, 2012; Oral et al., 2016). A buffer between the brain and stress occurs as
the trigger is removed and a positive support system and positive coping skills develop. This buffer makes the stress tolerable for the body, which will eventually recover and return to homeostasis.
Unhealthy Response
What if the stressor never goes away and the stress response never turns off? What happens when
children do not have a buffer (i.e., the adults in their lives are struggling with mental and physical
illness; substance abuse; their own chronic, complex trauma histories; historical genocide; loss of
culture; lack of resources; and/or financial strain)? The stress response remains elevated, creating
a toxic stress response.
When stressors become intense, frequent, or chronic, there is unremitting activation of the
hypothalamic-pituitary-adrenal (HPA) axis and the sympathetic nervous system. A complicated
cascade of hormones results in cortisol, norepinephrine, and epinephrine release, further affecting
the hepatic, cardiovascular, and respiratory system (Oral et al., 2016). Physiological processes described previously become dysregulated and maladaptive, blocking homeostasis and disrupting the
neurological, endocrine, and immune systems in both structure and function. Ultimately, this dysfunction leads to dysfunctional behavior and negative health outcomes (AAP, 2012; Danese et al.,
2009; Oral et al., 2016; Purewal et al., 2016; Szilagyi & Halfon, 2015).
When this toxic stress load occurs during sensitive periods of neurological and physical development, the stress load creates vulnerabilities in every aspect of development, including within
the DNA of individual cells (AAP, 2012; Danese et al., 2009; Oral et al., 2016, Purewal et al., 2016;
Szilagyi & Halfon, 2015). These changes can modify gene expression, further complicating health
status (Oral et al., 2016).
In addition to these epigenetic changes, structural changes occur within the brain as a result
of toxic stress. The areas affected include the hippocampus, the amygdala, and the prefrontal cortex—smaller volume and impaired functioning (Kerker et al., 2015; Oral et al., 2016). These structures are intimately involved with regulating behavior and emotions, as well as the formulation of
new memories. The specific damage done to these structures makes it difficult for the brain to appropriately respond to stress in the future. The brain affected by toxic stress will have an exaggerated stress response to small stressors. The person is likely to develop negative coping skills (Oral
et al., 2016). Some correlations with chronic, toxic stress in childhood include:
■
■
■
■
■
■
■
■
■
■
■
■
Diminished general health
High blood pressure
Overweight
Insulin resistance with onset of diabetes in early during adulthood
Poor dental health
Asthma
Attention-deficit/hyperactivity disorder (ADHD)
Autism
Learning difficulties
Delinquency
Further victimization as an adult (Purewal et al., 2016)
Increased risk for cervical cancer (Alcala, Mitchell, & Keim-Malpass, 2017)
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Chapter 22 Trauma-Informed Primary Care: Promoting Change Among Patients
The Fiscal Impact of Toxic Stress
Fang et al. (2012) attempted to calculate a per incidence cost for each case of child maltreatment.
They combined short- and long-term health costs (up to the age of 64), productivity losses from
the age of 6, child welfare costs, criminal justice costs, and special education costs for an average
lifetime cost per victim of child maltreatment of approximately $210,012. Using existing incidence
rates of ACEs, the national economic burden is $123 billion. These cost estimates do not include
the economic impact of child abuse that is unreported or unsubstantiated. Most likely, this estimate does not account for all related long-term health costs and chronic illness treatment costs associated with toxic stress. ACEs are a huge economic burden on the nation.
▸
Implementing Trauma-Informed Primary Care
Many PCPs have long-lasting relationships with families that may span generations. They are in a
unique position to reduce the risk of ACEs, educate and strengthen families and communities, and
treat health conditions with a trauma-informed approach (Szilagyi & Halfon, 2015).
Preparing PCPs for Trauma-Informed Primary Care
With education on prevention, early recognition, the impact of ACEs, and evidence-based interventions, PCPs are more comfortable and proficient with intervention, even when complex trauma has
occurred (McCarthy, 2008). These interventions ultimately can contribute to shaping healthy individuals, families, and communities. Yet, several studies have found that the preparation of healthcare
providers for responding to child maltreatment, identifying adverse experiences from the medical history, and having the tools to respond is inadequate (Starling, Heisler, Paulson, & Youmans,
2009). The following material is offered as a template to help PCPs address this common problem.
Primary Prevention
Prevention is one of the most valuable interventions by PCPs, considering the complicated interplay
among the individual patient, the family of origin, the community, and the sociopolitical environment (Oral et al., 2016). Primary prevention techniques should also include advocacy for community resilience programs targeted to prevent child abuse and increase the availability to mental health
and substance abuse treatment (Oral et al., 2016). Working with multidisciplinary teams, including social services, PCPs, and public health workers, helps to increase public awareness and education of evidence-based interventions. The goals are to reduce exposure to toxic stress and foster
community resilience (Oral et al., 2016).
Assessment for Toxic Stress
Assessing for toxic stress should be a part of the evaluation of any patient across the life span as
there is a 90 percent chance that a patient will have experienced at least one adverse event prior to
14 years of age (Flaherty et al., 2013). You cannot assess for healthy development without asking
critical questions related to toxic stress, particularly when using the medical home model (Danese
et al., 2009; Flaherty et al., 2013, Szilagyi & Halfon, 2015). Research shows that the effects of toxic
stress are rapidly evident with questioning (Kerker et al., 2015).
Implementing Trauma-Informed Primary Care
251
Providers see patients at regular intervals, allowing an opportunity to develop rapport, trust,
and intimate working knowledge of the family unit, including typical sources of stress. Ideally the
PCP can create a safe space, promoting full disclosure. Assessment should begin during the prenatal period to identify families at risk and connect them with services in the community (AAP,
2012; Kerker et al., 2015). Once the patient reaches the appropriate developmental level (usually
school age), screening the patient directly for ACEs is the general practice. However, it may not always be possible to identify toxic stress in early childhood given the patient’s developmental capabilities. However, even identification and intervention as late as adolescence can be effective in
promoting positive health outcomes (Flaherty et al., 2013).
Behavioral healthcare providers also regularly assess and screen for ACEs. During psychoeducation, this provider can educate the patient, family, and other caregivers about the impact of toxic
stress on the developing neurological system (see TABLE 221 for examples of screening tools available for PCPs and behavioral healthcare providers).
Intervention
The neurological system in early childhood and adolescence is vulnerable to stress but also responsive
to intervention. Early intervention is more likely to promote healing, develop resilience, and build coping strategies, counteracting the negative effects of ACEs and chronic toxic stress exposure (AAP, 2012;
Balistreri, 2015; Flaherty et al., 2013; Kerker et al., 2015; Purewal et al., 2016). Secondary prevention
strategies, after adverse events have occurred, can reduce severity. Strategies include psychological first
aid programs and cognitive behavioral therapy targeting the family (Oral et al., 2016). Tertiary prevention strategies may mitigate the severity of long-term consequences. This includes interventions
that create an awareness of the negative effects of trauma (i.e., the trauma-informed approach within
primary care, programs helping traumatized persons to identify and reduce risk behaviors, and social marketing campaigns that educate the public and build empathy about ACEs; Oral et al., 2016).
When identifying interventions, the provider needs to be aware of the impact of family and
intergenerational stress and trauma. The intervention needs to include the patient, parents, siblings, other significant relatives, and grandparents as applicable. Toxic stress often involves difficult
family dynamics and years of complex relationship dyads and triads (Szilagyi & Halfon, 2015). The
patient-centered medical home model can reduce risk by engaging families in long-term relationships and providing a site for continuous and comprehensive health care (Balistreri, 2015). Studies
of the medical home model have indicated that children with high ACE scores treated within the
medical home model have higher levels of well-being compared to children who are not treated
within this model of care (Balistreri, 2015).
Treatment plans can be created using validated tools that specifically target toxic stress reduction. TABLE 222 gives examples of validated tools for the design of treatment. Using these tools helps
PCPs to enhance their knowledge, increase their awareness of community resources, and engage
patients and families in appropriate community-based services. These programs (see Table 22-2)
have been shown to improve outcomes, reduce risk for further traumas, and may decrease rates of
childhood maltreatment (Flynn et al., 2015).
Reporting of Child Maltreatment
PCPs have an ethical, legal, and professional responsibility to recognize and report cases involving abuse or neglect of a child, as well as to recognize the risk for and progression of disease, response to treatment, and the patient’s and family’s ability to interact effectively within the healthcare
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Chapter 22 Trauma-Informed Primary Care: Promoting Change Among Patients
TABLE 221 Trauma-Informed Screening in Primary Care
Name
Description
Impact of Event Scale–Revised
(Weiss, 2007)
A 22-item questionnaire developed and based on DSM-IV
criteria for post-traumatic stress disorder (PTSD).
Life Stressor Checklist–Revised
(U.S. Department of Veterans Affairs,
2017a)
A 30-item instrument measuring lifetime exposure to stressful
events.
Primary Care PTSD Screen
(U.S. Department of Veterans Affairs,
2017b)
A 4-question instrument measuring symptoms of trauma
during the past month focusing on PTSD.
Short Form of the PTSD
Checklist—Civilian Version
(Flynn et al., 2015)
A 6-item instrument empirically derived from the 17-item
PTSD Checklist—Civilian Version for use in primary care
settings.
Childhood Trauma
Questionnaire—Short Form
(Flynn et al., 2015; Pennebaker &
Susman, 2013)
A 28-item retrospective self-report questionnaire designed to
assess five dimensions of childhood maltreatment.
Pediatric Symptoms Checklist (PSC)
(AAP, 2012)
Psychosocial screen designed to facilitate the recognition
of cognitive, emotional, and behavioral problems so that
appropriate interventions can be initiated as early as possible.
Safe Environment for Every
Kid (SEEK) Parent Screening
Questionnaire
(Dubowitz et al., 2011)
An evidence-based tool to briefly screen parents for
prevalent psychosocial problems that are risk factors for child
maltreatment, and that generally jeopardize children’s health,
development, and safety. Designed for children 0–5 years.
WE CARE Family Psychosocial
Screening Tool
(Garg et al., 2007)
A tool to assess parental drug use, parental depression,
domestic violence exposure, child abuse, housing situation,
education, and employment among parents of children.
Designed for children 2 months–10 years.
Stressful Life Events Screening
Questionnaire
(Goodman, Corcoran, Turner, Yuan, &
Green, 1998).
A 26-question standardized instrument measuring exposure
to all possible kinds of traumas, including sexual and
physical assault, witnessing violence, combat trauma, illness,
accidents, traumatic deaths, and natural disasters.
Data from Weiss, 2017; U.S. Department of Veterans Affairs, 2017a; U.S. Department of Veterans Affairs, 2017b; Flynn et al., 2015; Flynn et al., 2015;
Pennebaker & Susman, 2013; AAP, 2012; Dubowitz et al. 2011; Garg et al., 2007; Goodman et al, 1998.
Case Study
253
TABLE 222 Early Intervention Programs
Program Name/Intervention
Description
Circle of Security
(Circle of Security International, 2017)
An early intervention program for parents and children.
Period of Purple Crying
(National Center on Shaken Baby,
2017).
A parent education program specifically targeted at parents
of newborn infants to gain strategies for parenting, soothing,
and nurturing infants during 2 weeks–4 months of age.
SEEK: Safe Environment for Every Kid
(Bright Futures Tools for Professionals,
n.d.; Dubowitz et al., 2011)
A model from which to deliver pediatric primary care. This
method of care has been shown to help address many
psychosocial risk factors.
Triple P
(Sanders, 2008)
The Triple P—Positive Parenting Program is one of the most
effective evidence-based parenting programs in the world.
Parents, providers, communities, and organizations can use
this program.
Positive Parenting
(Gateway Health, 2017; Sanders, 2008)
Telephone-based parenting curriculum.
system. However, the literature consistently has shown that PCPs have a low rate of assessing and
reporting child maltreatment, even when the child presents with suspicious signs and symptoms.
There is also a low rate of providing education about the long-term effects of toxic stress (McCarthy,
2008). PCPs need to assume that any child within the child protective system is likely to have been
exposed to ACEs (Kerker et al., 2015).
CASE STUDY 221: IMPLEMENTING TRAUMA
INFORMED HEALTHCARE DELIVERY
You recently accepted a position as the director of nursing at a community health center that serves
families in an urban area of your home state. The population that is served varies widely in ethnic
background, socioeconomic status, and location. Upon hire, the clinic informs you that it recently
was awarded a grant to focus on trauma-informed healthcare delivery, and that outcomes will be
monitored for patients at the center. There are several tasks that the community health center has
asked of you to fulfill the grant requirements. First, the center is interested in educating both the
lay and clinical staff of the center on trauma, and how that affects the patients served by the clinic.
Second, it would like the providers of the clinic to have some competency in delivering health care in
a trauma-informed way. Last, the clinic would like there to be choices of evidence-based interventions
that are likely to result in improved health outcomes for the patients who are being served by the
clinic. You have only recently conceptualized the effects that toxic stress can have on individuals,
families, and communities, and are certainly not an expert.
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References
Alcala, H. E., Mitchell, E., & Keim-Malpass, J. (2017). Adverse childhood experiences and cervical cancer screening. Journal
of Women’s Health, 26(1), 55–64.
American Academy of Pediatrics. (2012). Policy statement: Early childhood adversity, toxic stress, and the role of the
pediatrician: Translating developmental science into lifelong health. Pediatrics. Retrieved from http://pediatrics
.aappublications.org/content/129/1/e224
Balistreri, K. S. (2015). Adverse childhood experiences, the medical home and the child well-being. Maternal Child Health
Journal, 19(11), 2492–2500.
Bright Futures Tool for Professionals. (n.d.) Pediatric symptoms checklist. Retrieved from https://www.brightfutures.org
/mentalhealth/pdf/professionals/ped_sympton_chklst.pdf
Circle of Security International. (2017). Circle of security. Retrieved from https://www.circleofsecurityinternational.com/
Danese, A., Moffitt, T. E., Harrington, H., Milne, B. J., Polanczyk, G., Pariante, C. M., . . . Caspi, A. (2009). Adverse childhood
experiences and adult risk factors for age-related disease: Depression, inflammation and clustering of metabolic risk
markers. Archives of Pediatric Adolescent Medicine, 163(12), 1135–1143.
Dubowitz, H., Lane, W. G., Semiatin, J. N., Magder, L. S., Venepally, M., & Jans, M. (2011). The safe environment for every
kid model: Impact on pediatric primary care professionals. Pediatrics, 127(4), e962–970.
Fang, X., Brown, D. S., Florence, C. S., & Mercy, J. A. (2012). The economic burden of child maltreatment in the United
States and implications for prevention. Child Abuse and Neglect, 36(2), 156–165.
Felitti, V. J. (2002). The relationship of adverse childhood experiences to adult health: Turning gold into lead. The Permanente
Journal, 6, 44–47.
Flaherty, E. G., Thompson, R., Dubowitz, H., Harvey, E. M., English, D. J., Proctor, L. J., . . . Runyan, D. K. (2013). Adverse
childhood experiences and child health in early adolescence. Journal of the American Medical Association: Pediatrics,
167(7), 622–629.
Flynn, A., Fothergill, K. E., Wilcox, H. C., Coleclough, E., Horwitz, R., Ruble, A., . . . Wissow, L. (2015). Primary care
interventions to prevent or treat traumatic stress in childhood: A systemic review. Academic Pediatrics, 15(5), 480–492.
Garg, A., Butz, A. M., Dworkin, P. H., Lewis, R. A., Thompson, R. E., & Serwint, J. R. (2007). Improving the management
of family psychosocial problems at low-income children’s well-child care visits: The WE CARE Project. Pediatrics,
120(3), 547–558.
Gateway Health. (2017). Positive Parenting Telephone Service. Retrieved from http://gatewayhealth.org.au/index.php?option
=com_content&view=article&id=194:positive-parenting-telephone-support-program-launch&catid=11&Itemid=236
Goodman, L., Corcoran, C., Turner, K., Yuan, N., & Green, B. (1998). Assessing traumatic event exposure: General issues and
preliminary findings for the Stressful Life Events Screening Questionnaire. Journal of Traumatic Stress, 11(3), 521–542.
Kerker, B. D., Zhang, J., Nadeem, E., Stein, R., Hurlburt, M. S., Heneghan, A., . . . Horwitz, S. (2015). Adverse childhood
experiences and mental health, chronic medical conditions and development in young children. Academic Pediatrics,
15(5), 510–517.
McCarthy, C. (2008). Doing the right thing: A primary care pediatrician’s perspective on child abuse reporting. Pediatrics,
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and trauma informed care: The future of health care. International Pediatric Research Foundation, Inc., 79(1), 227–232.
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Weiss, D. S. (2007). The impact of event scale—revised. In J. P. Wilson, & T. M. Keane (Eds.). Moderately assessing psychological
trauma and PTSD: A practitioner’s handbook (2nd ed., pp. 168–189). New York, NY: Guilford Press.
CHAPTER 23
Opioid Abuse and Diversion
Prevention in Rural Eastern
Kentucky
Tricia Flake
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss the health, financial, and social implications of the drug epidemic in the United States.
2. Describe factors unique to rural Eastern Kentucky that contribute to the drug crisis.
3. Provide examples from research that illustrate best practice in opioid diversion prevention in the
primary care setting.
▸
Introduction
Prescription drug abuse has been on the rise in the United States, and the occurrence of death from
overdoses has surpassed the leading cause of accidental death (Chapman, 2013). As the prescribing
of controlled substances rises so does the incidence of drug diversion particularly in the Appalachian region (Volkow & McLellan, 2016). Providers are now faced with the challenge of meeting
patients’ needs while developing policies to identify and decrease prescription drug diversion. Eastern Kentucky is a disproportionally high-diversion area due to high levels of poverty, lack of providers, and being a rural location (Appalachian Translational Research Network [ATRN], n.d.). At
a rural health clinic in Eastern Kentucky, the lack of policies to address the concern of prescription
drug diversion only lends itself to the continuing cycle. Therefore, the development of policies is
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Chapter 23 Opioid Abuse and Diversion Prevention in Rural Eastern Kentucky
imperative to decrease the occurrence of diversion. A review of the literature revealed four main
themes in diversion prevention: risk assessment, urine drug testing, utilization of prescription drug
monitoring systems, and treatment contracts.
▸
Background
Drug diversion includes any controlled prescription medication that has been utilized in a way other
than intended (Locke, 2016) with a disproportionately high prevalence in the Appalachian region
(McDonald, Carlson, & Izrael, 2012). This is inclusive of prescription pad theft, altering a prescription, selling or providing medication to others for whom it is not prescribed, or taking a medication in a manner for which it was not prescribed such as injecting or taking more than prescribed
(Locke, 2016). With prescription drug diversion on the rise, we need to prevent the inappropriate
use of such medications, particularly in areas where the rates are abnormally elevated. Providers
are now faced with the challenge of creating new diversion recognition and prevention strategies.
The significance of this has not evaded our leaders. President Trump has declared that the opioid
crisis is a national emergency, which was the recommendation of the presidential opioid commission (Vitali & Siemaszko, 2017). These policies are still in development and just beginning to be
implemented. Lawmakers, enforcers, and insurers are taking steps to address this problem, but primary care providers are instrumental in implementing policies as well.
▸
Health, Financial, and Cultural Implications
of the Drug Crisis in the United States
Health
For many years, the leading cause of accidental death in the United States was motor vehicle accidents. In 2008 this statistic was surpassed by deaths from drug overdoses (Chapman, 2013). Overdose deaths from opioid prescriptions are higher than deaths caused by heroin and cocaine overdoses
combined (Rasubala, Pernapati, Velasquez, Burk, & Ren, 2015). There is “enough hydrocodone to
medicate every adult in the United States around the clock for one month” (Rasubala et al., 2015;
Walker & Webster, 2012).
The nonmedical use of prescription opioids has been documented for centuries; however, in
the United States, the prevalence was relatively low until The Joint Commission determined pain
should be the fifth vital sign, informing providers that pain was not being properly treated (Stanton, 2013). This action redefined how pain was managed and contributed to the problem of prescription opioid abuse by encouraging providers to treat pain more aggressively (McDonald et al.,
2012; Stanton, 2013).
Prescription drug diversion has quadrupled with Eastern Kentucky leading the nation (Wilson, 2013). One such example of this was the death of nine persons in 3 months all located in one
rural county in eastern Kentucky (McDonald, 2015). In addition to the deaths of numerous individuals, the safety of providers is heightened as this problem continues. There is a lot of evidence
that providers are being harmed: An Eastern Kentucky provider was shot and killed over a patient’s desire to obtain opioids (Associated Press, 2009), and a physician was killed by a patient’s
husband because the doctor refused to give the patient her pain medication (“A Doctor Was Killed
Health, Financial, and Cultural Implications of the Drug Crisis in the United States
259
for Refusing to Prescribe Opioids,” 2017). Providers have an ethical stake to do no harm as well as
to do good and, therefore, must balance these two goals.
Financial
Nationally this epidemic of prescription drug abuse costs the United States an estimated $192 billion per year in healthcare costs, loss of productivity, and legal and social costs (Lindsey, 2016).
The lack of work opportunities has made opioid selling a profitable business with one single OxyContin tablet having a street value of up to $40 (“Oxycodone,” n.d.). Providers are impacted by this
problem as well. Financially providers need to have a sound business plan, and because providers
are the primary sources for patients to obtain opioids (Lofwall, 2013), failure to provide the drugs
may impact their businesses. Patients may seek care from another, more willing provider, or the
provider will put him- or herself at risk with angry patients.
In Kentucky the number of deaths from prescription drugs exceeds that from automobile fatalities (Wilson, 2013). Kentucky’s overdose rate continues to climb. In 2013 Kentucky ranked sixth
highest in the nation with more than 1,000 persons annually dying from prescription drug overdoses
(Wilson, 2013). Data for 2015 shows Kentucky as third highest in the nation (Centers for Disease
Control and Prevention [CDC], 2016). In response Kentucky passed House Bill 333 into legislation, which limits the prescribing of hydrocodone-containing products to a 3-day supply for acute
pain (House Bill 333, 2017). Babies from addicted mothers cost Kentucky an average of $53,000
per infant (Devlin-Phinney, 2013) with approximately1,060 babies this last year (Journey of Healing and Hope, 2017). The cost of prison for one Kentucky inmate for drug abuse issues is $23,000
a year, whereas identifying and treating addiction cost $2,500 (Clark, 2013).
Prescription drug diversion, which is the misuse of prescription drugs for anything other than
their intended use, has been positively correlated with an increase in prescription opioid prescribing
(Volkow & McLellan, 2016). It becomes even more essential that providers have a policy in place.
Evidence exists that a protocol change may result in a decrease in the diversion of prescription medications and an increase in the recognition of those who are contributing to opioid drug diversion.
Cultural
Nationally the drug culture has risen with the United States consuming 80 percent of the world supply of prescription drugs, and more money being spent on prescription drugs than any other goods
or products (Stanton, 2013). The mind-set with prescription drugs is that they are safer than street
drugs and the risk of harm is low (Havens, 2013). However, for the first decade of the 21st century
only seven states (including Kentucky) had more than a 10 percent increase in deaths, all in rural
and statistically White areas, whereas in the second decade, 33 states showed an increase, spreading to urban areas and other racial groups as well (Achenbach & Keating, 2017). There is also a
strong correlation with mental illness and substance abuse (Clark, 2013). Substance abuse statistics in pregnancy indicate a higher rate of use among those who are unwed, unemployed, and with
the father of the baby not providing support (Weeks, 2013). These cultural and social nuances affect all of us now and in the future.
In Kentucky, the rise of prescription drugs can be partially attributable to access. In urban areas,
although prescription drug abuse has risen, heroin continues to remain in the forefront owing to cost
and availability. In rural communities, prescription opioids, which act like heroin, are cheaper, more
easily accessible, and the drug of choice (Havens, 2013; Stanton, 2013; Walker & Webster, 2012).
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Chapter 23 Opioid Abuse and Diversion Prevention in Rural Eastern Kentucky
Whitley County in Eastern Kentucky has been affected by prescription drug abuse heavily in
recent years. The “Florida pill mill pipeline” has been notorious for a huge source of prescription
narcotics, which are purchased in Florida and travel up Interstate 75 into rural counties such as
Whitley (Ungar, 2011). The prevalence of this social phenomenon in rural Kentucky has prompted
the terminology pillbillys (Ungar, 2011). Not only do residents obtain prescriptions from Florida,
but also several local providers have been involved in inappropriate prescribing, three providers
losing their license to practice (Underwood, 2012). Whitley County, a very rural community, has
only four primary care practices. Although three providers lost their licenses, these practices remain open with new providers in place.
The eastern Kentucky population is primarily rural and underserved with a high level of poverty
(ATRN, n.d.). This triad is deadly. The per capita income of Whitley County in Eastern Kentucky
is just over $16,000 compared to the U.S. average of $58,000. Unemployment in Whitley County
is 7.2 percent compared to 4.3 percent for the United States (U.S. Department of Labor, Bureau of
Labor Statistics, 2016). The lack of resources, job opportunities, and primary care providers creates an environment for continued poverty and vulnerability to opioid diversion.
The culture of rural Eastern Kentucky is one of tight-knit family groups with strong Christian
roots (ATRN, n.d.; Vance, 2016). Those who are new to the area have a difficult time infiltrating
the circles unless they are deemed over time and by others to be trustworthy (Vance, 2016). Mistrust of medicine and law enforcement makes the task of opioid diversion reduction a difficult one
as fear of the consequences exists (Havens, 2013; Vance, 2016). The language of the area has its own
slang and meanings that must be understood (Breckinridge, 1952). Understanding the devout religious beliefs and how they impact the family dynamic and decision making can influence the direction the provider takes when addressing a patient with diversion risks. Providers need to accept
and respect these social norms in order to be effective.
▸
Opioid Diversion Prevention
Opioid diversion is a prevalent problem leaving primary care providers with the task of negotiating the risks and consequences without much direction on how to manage this task in a short
office visit. A review of the literature revealed four main themes in diversion prevention: risk assessment, urine drug testing, utilization of prescription drug monitoring systems, and treatment
contracts. Screening tools should be used to determine if the patient is at high risk for diversion
or abuse of prescription medications (Volkow & McLellan, 2016). While prescribing opioids,
urine drug screens should be used and a policy ensuring compliance along with detailed actions
to be taken for failed screenings should be implemented (CDC, 2016). Prescription drug monitoring systems (PDMS) have been shown to be invaluable in detecting diversion (Alford, 2013;
CDC, 2016; Chapman, 2013; Rasubala et al., 2015; Volkow & McLellan, 2016). Diversion prevention policies should include treatment guidelines for appropriate prescription of controlled substances that include a step approach to treatment, documenting, and prescribing opioids when
other treatment modalities have failed. This plan should be coupled with a written pain contract
(CDC, 2016).
Risk Assessment
Researchers have found several common characteristics or patterns of behavior that are associated with a higher risk of opioid diversion (CDC, 2016). Initial screening can be done quickly and
Opioid Diversion Prevention
261
efficiently during the office visit with tools such as the Opioid Risk Tool (ORT). This is a self-report
subjective screening tool, developed by Webster and Webster (2005), which is used to detect possible opioid abuse risk potential among adults. It is an essential with opioid prescribing (Gudin,
2012; Peppin et al., 2012; Pesce, West, City, & Strickland, 2012, Volkow & McLellan, 2016).
This instrument is a questionnaire completed by the patient. Answers are separated by gender with scores weighted higher for males with a family history of substances abuse and weighted
higher for females with a personal history of preadolescent sexual abuse. If the patient scores between 0 and 3 they are considered low risk, between 4 and 7 moderate risk, and 8 or above is considered high risk (Webster & Webster, 2005). Those who are considered high risk should be referred
to pain management or an addiction specialist for evaluation (Berland & Rodgers, 2012).
An additional component of this screening is the physical exam (CDC, 2016). Objective signs
of possible drug abuse include inflamed nares, track marks, pinpoint pupils, or excessive sweating
(Stanton, 2013). Other behaviors that should be considered as possible drug-seeking behavior include routinely asking for late appointments, rushing a visit with reasons of another engagement,
and missing or refusing therapy or diagnostic tests (Peppin et al., 2012). Drug-seeking patients may
claim their prescriptions were stolen or lost or they may request early refills (Peppin et al., 2012;
Walker & Webster, 2012). Additionally, they may request specific drugs, report multiple allergies
to non-opioids, or refuse treatment with other medications (Prescribe Safe, 2015). Other historical findings typically associated with high risk of diversion include a family history of drug abuse,
a personal history of substance abuse, or a history of mental illness (Apeldoorn et al., 2012; Peppin
et al., 2012; Walker & Webster, 2012, Volkow & McLellan, 2016).
Urine Drug Testing
Urine drug testing (UDT) has been identified as a valuable tool in the providers’ arsenal (CDC,
2016). In one study of over 900,000 urine drug samples, 75 percent had abhorrent results (Alford,
2013; Peppin et al., 2012). This indicates UDT is an imperative tool to use. Abnormal test results
ranged from prescribed substances missing in the sample or additional substances that were not
prescribed found in the urine (Alford, 2013; Peppin et al., 2012).
There are different methods of UDT including immunoassay point-of-care testing, which is the
most cost-effective. However, it can produce inaccurate results, necessitating confirmation by gas
chromatography laboratory testing, which takes time (Gudin, 2012). Point-of-care testing should
measure temperature and specific gravity of the sample to ensure absence of tampering with the
sample (Peppin et al., 2012). The temperature should be measured within 4 minutes of obtaining
the sample and should range between 90 and 100 degrees with a creatinine measurement above
20 mg/dL (Berland & Rodgers, 2012). The pH range should also be between 4.5 and 8 (Berland &
Rodgers, 2012). If the urine has been diluted through ingestion of a large volume of fluids, it will
have a creatinine below 20 mg/dL, and if the sample has been adulterated, the creatinine will be
below 5 mg/dL (Berland & Rodgers, 2012).
Mass spectrometry results provide both qualitative and quantitative results. Some benefits include determining if the patient is taking the opioid in the amount and manner prescribed or if
the patient shaved a bit of the pill into his or her urine sample to test positive (Pesce et al., 2012).
It is important to include alcohol measurements in UDTs owing to the high risk of concomitant
interactions, increased sedation, and risk of death. Providers must be aware of the short half-life
of alcohol. Therefore, if a patient tests positive for alcohol while being treated with opioids, a different conversation needs to take place between the provider and the patient (CDC, 2016; Pesce
et al., 2012). Additionally, laboratory testing, rather than point-of-care testing, can detect alcohol
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Chapter 23 Opioid Abuse and Diversion Prevention in Rural Eastern Kentucky
metabolites that were ingested as much as 3 days prior. However, levels are not necessarily indicative of the amount of alcohol consumed (Pesce et al., 2012). Alcohol-based hand cleaners are not
likely to yield positive results (Pesce et al., 2012). Witnessed UDT provides a higher accuracy of the
test but also risks harming the trust relationship between the provider and the patient.
At the initial visit, a UDT should be performed and then at intervals of one to two times a year,
more often if the patient is considered high risk (Berland & Rodgers, 2012; Peppin et al., 2012).
UDT should be scheduled routinely but also should include random screening to deter patients
from learning the UDT schedule and manipulating diversion to pass a scheduled UDT (CDC,
2016; Pesce et al., 2012).
Prescription Drug Monitoring Systems
PDMSs are an important component of the diversion prevention process and must be implemented when prescribing opioids (Alford, 2013; CDC, 2016; Chapman, 2013, Rasubala et. al., 2015;
Volkow & McLellan, 2016). Forty-nine states, including Kentucky, have implemented PDMSs to
allow providers to quickly and efficiently identify who is prescribing what and to whom (CDC,
2016; Chapman, 2013). However, in Kentucky the system was not used to its fullest extent until
the implementation of House Bill 1, which requires all providers with controlled substance prescribing privileges to be registered users of the PDMS and query the system a minimum of every
3 months (House Bill 1, 2012).
PDMS aids in the detection of “doctor shopping” whereby patients see multiple providers to
obtain controlled substances (Rasubala et. al., 2015). Providers can query and obtain information
on what prescriptions for controlled substances a patient is filling from which providers (Chapman,
2013; Volkow & McLellan, 2016). PDMS has been shown to be effective in reducing prescription
opioid diversion (CDC, 2016; Volkow & McLellan, 2016).
PDMS e-prescribing for controlled substances has been helpful in reducing prescription narcotic diversion, eliminating a patient having a prescription in hand which could potentially be
altered. Prescriptions are sent electronically to pharmacies. This is not yet mandatory, is not available in all states, and is still a developing technology (Thomas et al., 2013). PDMSs are state specific, and drug-seeking patients may be willing to travel great distance to obtain medications from
out-of-state providers. Providers can register for PDMS in multiple states but this can be a time
burden for providers and staff.
Treatment Agreements
Treatment agreements are an important component in preventing diversion, outlining patient expectations and goals of the plan of care (Alford, 2013; CDC, 2016; Peppin et al., 2012). Treatment
agreements help to keep communication open and facilitate the provider’s role as a caregiver, not a
law enforcement officer (Alford, 2013; Peppin et al., 2012). The treatment agreement helps the patient understand the risks of opioids, diversion prevention strategies such as pill counts, and how
UDS testing is utilized. What to expect with suspected diversion is also covered (Alford, 2013; Peppin et al., 2012). Treatment agreements should also include the requirement that the patient will
see one provider and use one pharmacy (Prescribe Safe, 2015). Treatment agreements explain the
treatment goals. Pain reduction on a pain scale is not necessarily the goal, but rather improvement
in function such as ability to work or perform activities of daily living (ADLs; Berland & Rodgers,
2012). Treatment agreements should be reviewed and signed by both the patient and the provider
at the initial visit (Peppin et al., 2012).
Case Study
263
CASE STUDY 231: MANAGING OPIOID ADDICTION
IN THE PRIMARY HEALTHCARE SETTING
This case study is a fictional representation of managing opioid addiction in a primary care practice in
Eastern Kentucky. The nurse practitioner (NP) owns and manages a practice that was previously owned
by a provider who lost his license because of overprescribing narcotics.
Jane, age 28, is a returning patient with a history of chronic low back pain managed with
chiropractic care and non-opioid pain medication. She has a history of drug abuse and incarceration.
She lives intermittently with her mother who has custody of her five children. Jane has no
transportation outside the local community, and the nearest pain management clinic is 2 hours away.
She was recently released from jail and is in a court-ordered drug monitoring and treatment program.
Since release from jail, she has maintained sobriety.
Today, Jane is seen in the clinic. She states the current non-opioid medication is not helping with
her back pain and she is requesting “something stronger.” The NP checks the PDMS, which, in Kentucky,
is called the Kentucky All Schedule Prescription Electronic Reporting (KASPER). Jane’s record shows no
controlled prescriptions in the KASPER file, indicating that no prescriptions have been written for her.
The NP then asks Jane to self-report on the ORT. Jane’s score is 10, demonstrating a high risk for opioid
use. The score is as follows:
■
■
■
■
■
Family history of alcohol abuse = 1
Personal history of illicit drug use = 4
Age = 1 (between ages 16–45 years)
History of preadolescent sexual abuse = 3
Psychological disease (depression) = 1
The next step is a urine drug screen (UDS). The point-of-care testing showed appropriate
temperature, pH, creatinine, and specific gravity but positive for hydromorphone. The NP explains
she will send the specimen out for confirmatory testing, expecting results within a week. Jane denies
taking any controlled substances.
Jane’s physical exam by the NP at this visit is unremarkable except for exaggerated range of
motion (ROM) compared to her ROM when the NP was observing her. The NP reviews the current
treatment agreement in which Jane agreed to use no controlled substances. The NP says she will
await the UDS results and evaluate the last MRI for the back pain. She recommends that Jane continue
therapy and, in addition, try some other treatment modalities such as transcutaneous electrical nerve
stimulation (TENS) and compounded pain patches from the local pharmacy. Jane and the NP discuss
the high-risk ORT, the lack of trial with other non-opioid treatments, the history of street drug abuse,
and today’s point-of-care UDS results.
The patient becomes agitated, saying hydrocodone is what she needs for her pain. The NP reassures
her that there are non-narcotic options to try at this point. The patient becomes polite and says she had
forgotten that she had received hydrocodone at the local emergency room (ER) last week where she was
seen for back pain. The NP says she will contact the ER for confirmation on the drug dosage.
Jane becomes agitated again, saying she must leave immediately to pick up her kids up from
school and requests the opioid prescription right now. She says the NP can confirm with the ER
between now and the next visit. The NP refuses to write a prescription, suggesting that Jane try the
current treatment plan and return in a week for evaluation.
Jane’s agitation increases. She begins to talk rapidly, saying she must have the prescription right
now and she will not be able to return next week as she has a court date. She begins to cry and beg
(continues)
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Chapter 23 Opioid Abuse and Diversion Prevention in Rural Eastern Kentucky
CASE STUDY 231: MANAGING OPIOID ADDICTION
(continued)
IN THE PRIMARY HEALTHCARE SETTING
for the medication. She states the police planted drugs on her and that is why she was in jail. The NP
attempts to comfort her, quietly reminding her that she is her health provider, not law enforcement.
Jane becomes calmer and says goodbye.
However, as soon as she reaches the waiting room, Jane begins to shout and curse, saying no
one will help her with her pain. The office manager takes her to a quiet room and talks calmly to her.
Jane calms down again but as soon as she starts to leave, she again starts yelling, threatening the
NP and the staff by saying she would be back with guns and people to help her get the prescription.
The office manager notifies law enforcement and relocates other patients from the waiting room
to treatment rooms. The police arrive as Jane continues to scream. They attempt to calm her but
her agitation increases. She was arrested. Her volatility and rapid mood changes are typical of drugseeking behavior.
▸
Conclusion
Prescription drug diversion is a rising trend in the United States, particularly in the Appalachian
region of Kentucky. This major issue of vulnerability requires diligent, comprehensive, thorough,
and thoughtful care. A reduction in this trend cannot be accomplished without providers using
evidence-based protocols to recognize and prevent prescription drug diversion. With the cost to
implement being so minimal and the benefits being beyond measure, this is a realistic strategy to
address a public health epidemic that has hurt so many individuals and families.
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good, the bad, and the ugly of addiction. Symposium conducted at the University of Kentucky, Lexington, Kentucky.
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=.0ecba9380536
CHAPTER 24
Culturally Contextualized
Community Outreach
Program to Promote
Breastfeeding Among African
American Women
Rachel Simmons
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the health benefits of breastfeeding.
2. Discuss how the U.S. Surgeon General’s Call to Action to Support Breastfeeding can be
implemented among African American women.
3. Define elements of culture that can be incorporated to support breastfeeding programs for
vulnerable populations, including African American women.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
267
268
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Chapter 24 Culturally Contextualized Community Outreach Program
Introduction
Breastfeeding is endorsed and supported worldwide owing to evidence-based health and economic
benefits (Kramer et al., 2001; Weimer, 2001). The literature documents and establishes breastfeeding’s physical, psychological, psychosocial, and economic benefits (Bartick & Reinhold, 2010; Hale,
2007; Jäger et al., 2014; Luan et al., 2013). Breastmilk naturally contains appropriate amounts of antibodies, proteins, fats, stem cells, anti-inflammatory agents, and epigenetic properties that improve
infant survival through prevention of acute and chronic illnesses and promotion of immunity to
disease (Meier, Engstrom, Patel, Jegier, & Bruns, 2010). Further, the maternal health benefits from
breastfeeding extend several years after cessation (Stuebe et al., 2009; 2010). Exclusive breastfeeding
has been shown to reduce maternal morbidity and mortality rates and is a global primary prevention strategy for improving maternal and child health (World Health Organization [WHO], 2011).
▸
Breastfeeding: A National Priority
Breastfeeding is a national priority aiming to reduce health disparities, improve maternal and infant health, and decrease healthcare costs (Centers for Disease Control and Prevention [CDC],
2017; U.S. Department of Health and Human Services [DHHS], 2011). Various agencies in the
United States have formulated strategic plans and calls to action to increase breastfeeding rates
(Office of Disease Prevention and Health Promotion [ODPHP], 2017; DHHS, 2011). Leading authorities, such as the American Academy of Pediatrics (AAP; 2012), the American Diabetic Association (ADA; 2005), the American College of Nurse-Midwives (ACNM; 2016), the American Public
Health Association (APHA; 2007), and the American College of Obstetricians and Gynecologists
(ACOG; 2016) support breastmilk as the number one food source for infants. There is consensus
that breastfeeding should continue for the first year of the infant’s life and exclusively for the first
6 months (American Academy of Family Physicians [AAFP], 2014; AAP, 2012). The U.S. Surgeon
General (2012) issued a call to action to support breastfeeding and outlined 20 evidence-based actions with strategies that could be implemented for disparaged populations.
Efforts have been dedicated to increasing breastfeeding support among diverse groups and
those who breastfeed at the lowest rates, that is, African Americans and low-income women (CDC,
2014; DHHS, 2011). Many African American women in the United States do not initiate or sustain
breastfeeding for recommended times (CDC, 2014). The reasons for this low rate among African
Americans is historical, complex, and multifactorial (Cricco-Lizza, 2006; McDowell, Chia-Yih, &
Kennedy-Stephens, 2008). There is, however, evidence that community-based programs are the
ideal settings to implement evidence-based strategies (DHHS, 2011). This chapter describes key
elements of cultural support for breastfeeding African American women and presents an exemplar program implementing Actions 1 and 2 of the U.S. Surgeon General’s Call to Action to Support
Breastfeeding (2012) in a community health center setting.
▸
Cultural Context Supporting Breastfeeding
Evidence-based practice in the context of culture is critical for developing interventions for diverse groups and vulnerable populations (Giger & Davidhizar, 2007). A variety of breastfeeding
teaching-learning strategies are recommended because there is consensus that no single intervention
is superior (Britton, McCormick, Renfrew, Wade, & King, 2007; Lumbiganon et al., 2011; Sikorski,
Cultural Context Supporting Breastfeeding
269
Renfrew, Pindoria, & Wade, 2003). Low-income and African American women often choose not to
breastfeed based on various physical, psychosocial, and economic factors. These groups of women
may benefit from multipronged educational approaches (DHHS, 2011) that explain breastfeeding
benefits and address barriers and myths (Fairbank et al., 2000; Guise et al., 2003). In addition, these
women also benefit from professional and family support.
Explaining the Benefits of Breastfeeding
The benefits of lactation for the infant and the mother are so well established that virtually no
evidence-based literature has identified otherwise. Breastfeeding and human milk provides maternal and infant health benefits (Meier et al., 2010) that may assist African Americans by reducing the
health disparities gap. African Americans potentially have the most to gain from breastfeeding, yet
often express ambivalence about feeding choices (Robinson & VandeVusse, 2011).
Protection of the Infant
African American infants are more likely than Caucasian infants to die from preterm-related conditions such as sudden infant death syndrome and low weight at birth (CDC, 2014). Research has
shown that breastfed infants have modulated structural and functional processes allowing for reductions in specific premature-related diseases (Meier et al., 2010). Breastmilk contains organic
and health-promoting properties that offer short- and long-term protection to the infant (Hale,
2007; Meier et al., 2010).
Protection of the Mother
African American women are more likely to die from breast and ovarian cancer than White women
(CDC, 2016). The lactation process is protective against ovarian and breast cancers (Horta, Bahl,
Martines, & Victoria, 2007), and studies suggest protection against autoimmune-type conditions,
such as multiple sclerosis (Langer-Gould et al., 2017).
Addressing Barriers and Myths
Barriers
African American women perceive the need to return to work, fear of pain, concerns about adequate
milk production, and self-efficacy in breastfeeding as a few of the barriers to breastfeeding (Furman,
Banks, & North, 2013; Hurley, Black, Papas, & Quigg, 2008). Lactation is a natural physiological
process, but it requires adequate support for initiation or maintenance, including respectful listening and careful attention by the healthcare provider in addressing perceived barriers (Berens, 2015).
Myths
Many myths about the benefits and risks of breastfeeding exist. For instance, a common, unsubstantiated myth perpetuated in the African American community is that breastfeeding women should
avoid hot, spicy foods because they will make the baby hot tempered and mean (Hannon, Willis,
Bishop-Townsend, Martinez, & Scrimshaw, 2000). To dispel such food myths, providers should
educate mothers regarding signs and symptoms of infant intolerance to a maternal food, such as
the infant crying more than normal, poor sleeping habits, irritability, or changes in stool patterns.
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Chapter 24 Culturally Contextualized Community Outreach Program
Breastfeeding mothers should strive to eat a well-balanced diet, which may consist of occasional
indulges of hot, spicy foods. There are many other myths associated with breastfeeding, often perpetuated by family members, that deter the initiation, continuation, and exclusivity of breastfeeding (DHHS, 2011; Hannon et al., 2000).
Providing Professional Support
Culturally appropriate breastfeeding education presented by knowledgeable providers has been consistently identified as an intervention improving breastfeeding support (Guise et al., 2003; Ibanez
et al., 2012; Renfrew, McCormick, Wade, Quinn, & Dowswell, 2012; Wambach et al., 2011). However, many healthcare professionals either do not encourage exclusive breastfeeding or provide contradictory messages (Abba, De Koninck, & Hamelin, 2010). These professionals may fail to discuss
the benefits of breastfeeding for the premature infant, especially with low-income, African American, and Hispanic mothers (Miracle, Meier, & Bennett, 2004). In addition, African Americans are
less likely to receive breastfeeding education during prenatal visits or to have adequate hospital
lactation support (Gee, Zerbib, & Luckett, 2012).
Research outside the field of breastfeeding education exposes communication disparities stratified by race, particularly with African American women (Siminoff, Graham, & Gordon, 2006),
which can intensify the African American breastfeeding disparity gap and increases maternal-infant
vulnerabilities to acute and chronic illnesses (Robinson & VandeVusse, 2011). Women attend to
the advice of healthcare providers who need to actively promote the initiation and maintenance of
breastfeeding (Lu, Lange, Slusser, Hamilton, & Halfon, 2001; Tavares et al., 2004).
Encouraging Family Support
The mother’s sense of confidence, empowerment, commitment, and satisfaction are associated
with positive family support (Mannion, Hobbs, McDonald, & Tough, 2013; Marchand & Morrow,
1994; Pisacane, Continisio, Aldinucci, D’Amora, & Continisio, 2005). Families are support partners, and education needs to be provided in a culturally appropriate manner (DHHS, 2011; Lewallen & Street, 2010; U.S. Breastfeeding Committee [USBC], 2010).
▸
An Exemplar Community-Based Breastfeeding
Education Program
The following case study presents implementation strategies based on The U.S. Surgeon General’s
Call to Action to Support Breastfeeding, Action Steps 1 and 2, to improve breastfeeding support for
African American women, aged 18 years of age and older, cared for at two community health centers in Florida.
▸
The Conceptual Framework for the Curriculum
Vulnerable populations often present with challenging and complex circumstances that impact
health behaviors. The conceptual framework of Albert Bandura’s theory of self-efficacy (1977)
was utilized in this project because a lack of self-efficacy in breastfeeding is often a barrier for
The Conceptual Framework for the Curriculum
271
African American mothers (Furman et al., 2013). The four key components of the theory are
mastery experiences, vicarious experiences, social persuasion, and perception of a physical and
psychological state.
Mastery Experiences
The most important component to increase self-efficacy is mastery experiences (i.e., previous success with a task). Mastery experiences involve an increase in self-efficacy associated with the perception of successful experiences and decreases with perceived failures (Bandura, 1977). A woman
who perceives previous breastfeeding success would likely possess the confidence to repeat that
behavior. To promote mastery, patients, staff, and family members were encouraged to discuss
and internalize previous breastfeeding successes and failures. Education focused on maximizing
breastfeeding successes and minimizing or overcoming failures. Most staff, across racial identity,
reported previous successes with breastfeeding. Perceived failures among the staff and patients
were consistent with the literature citing stresses with return to work and perceived low milk supply (Hurley et al., 2008).
Vicarious Experiences
Vicarious experiences can be influenced by positive or negative role models. These experiences
are related to observing a similar experience or activity through a person modeling the behavior
(Bandura, 1977). Positive role models are pertinent to the breastfeeding process, and the literature
supports the need for culturally relevant depictions of those engaging in the behavior. The learning plan for staff stressed the importance of role modeling. Patients and families were advised to
locate positive role models within their families and communities to maximize influence and exposure to those with successful breastfeeding experiences. Patients and families were cautioned about
negative influences and experiences of others, suggesting that these experiences should be considered in context. The author developed and provided a patient self-help book with communitybased, culturally appropriate resources.
Social Persuasions
Persuasion to breastfeed consisted of verbal encouragement, as a method to promote health behavior suggested by Bandura (1977) and Tavares et al. (2004). Social persuasion is a method that can
increase confidence in the ability to breastfeed. Staff and family members were encouraged to use
verbal support to help the mother initiate and continue breastfeeding. In addition, they were educated on ways to reduce negative feedback that impedes breastfeeding practices.
Physical and Physiological State
According to Bandura (1977), it is necessary to reduce the perception of a negative physiological
and physical state to increase self-efficacy. The patient participants were educated about sore nipples, engorgement, and perceptions of inadequate milk supply that can impede the lactation process.
Healthcare providers play a pivotal role through providing anticipatory education about comfort
measures, lactation principles, and breastfeeding skills, and dispelling myths. An international
board-certified lactation consultant (IBCLC) and/or a peer counselor can offer evidence-based
guidance that may reduce the anxiety and stress that leads to a negative physical and physiological
state (International Board of Lactation Consultants, 2018).
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Chapter 24 Culturally Contextualized Community Outreach Program
Program Implementation
The Florida-based community-oriented health system described in this chapter has provided comprehensive family, pediatric, dental, and women’s healthcare services to many vulnerable patients
and family, including African Americans, for over 40 years. The mission of the organization is to
provide quality health care and access to vulnerable populations. The author practices at project
site one and shares patient care with staff at project site two. The practice management systems at
the two sites are identical.
Following a needs assessment, discussions with key stakeholders, and a patient survey, it was
determined that African American patients at these centers needed increased support to implement
breastfeeding practices in accordance with The Surgeon General’s Call to Action to Support Breastfeeding (2012). The Healthy People 2020 breastfeeding goals of 81.9 percent of infants ever breastfed have not been achieved for African Americans to date (CDC, 2014), although positive strides
have been made, and the breastfeeding gap among African Americans has narrowed.
The Call to Action Steps 1 and 2 delineated that breastfeeding would be increased by giving
mothers additional education and support and by developing programs to educate fathers and
grandmothers about their roles in the process:
■
■
Action 1: Give mothers the support they need to breastfeed their babies.
Action 2: Develop programs to educate fathers and grandmothers about breastfeeding (DHHS,
2011).
The curriculum comprised four 1-hour education sessions covering a variety of evidence-based,
culturally contextualized content targeting African American mothers and family members as well
as clinic staff. The sessions drew upon concepts from It’s Only Natural: Mother’s Love, Mother’s Milk
(DHHS, 2013) and the United Nations Children’s Fund (UNICEF) Baby Friendly Initiative (1991).
The program included benefits of breastfeeding, lactation principles, myths, and support needed
for successful breastfeeding for African American women. A model participant learning plan was
developed to encourage active and thoughtful inclusion of the components of self-efficacy and the
Call to Action Steps 1 and 2 (see TABLE 241).
TABLE 241 Implementing Steps 1 and 2 of The Surgeon General’s Call to Action:
Achieved and Planned Outcomes
Description of the Activities
Carried Out
Indicators of Achievement
Internalization of the scientific
underpinnings of breastfeeding
Author role-modeled proposed practices and certified as a
breastfeeding specialist (BS) and international board-certified
lactation consultant (IBCLC). All participants scored 80% or
better on post-assessments.
Development of the project for
meaningful learning and enhanced
participant outcomes
Educational curriculum formulated, participant involvement,
company approval, positive feedback, and dissemination of
information to key stakeholders. All participants reported
learning new and useful information.
The Conceptual Framework for the Curriculum
273
Description of the Activities
Carried Out
Indicators of Achievement
Utilization of clinical scholarship and
analytical methods for evidencebased practice
Thorough analysis of contextual literature, evaluation of
practice outcomes with changes, and evidence-based
methodologies incorporating patient-centered care.
Application of information systems
and technology for the improvement
and transformation of health care
Collaboration with health informatics/technology nurse to
update postpartum template to capture breastfeeding status
with the incorporation of barriers that impede the process.
Create method of meaningful use for
electronic medical records system
related to breastfeeding
Addition of evidence-based variables to computer
system with staff education as a mode of tracking future
breastfeeding rates.
Incorporate vicarious experiences
Approval for displaying culturally relevant posters in exam
rooms. Observation of staff discussing the benefits of
breastfeeding with patients.
Analysis of healthcare policy for
advocacy
Incorporation of the essential federal and state
breastfeeding policies with special attention to workplace
laws incorporated into curriculum and disseminated to
participants to advocate for equitable and social principles.
Interprofessional collaboration for
improving patient and population
health outcomes
Collaboration with executive staff, physicians, advanced
practice nurses, and allied health to evaluate company
standard, implement project, and redirect culture.
Exhibition of advanced practice
nursing
Creation of community resources/self-help booklet;
development of staff learning module; approval for live
learning sessions.
Description of Future/Discussed
Activities
Indicators of Progress
Regular breastfeeding classes
Discussions with key executive staff.
Live staff learning sessions
Renewed interest with new learning director; creation of a
breastfeeding module for sessions.
Peer-to-peer support groups
Nurse access to breastfeeding courses to further vicarious
experiences; several ethnic nurses verbalizing desire to
become peer counselors.
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Chapter 24 Culturally Contextualized Community Outreach Program
After informed consent was secured, 34 staff and 37 patients with their family members participated. The author, a doctoral-prepared African American women’s health nurse practitioner,
strived for cultural humility throughout the sessions, acknowledging the social, racial, cultural, financial, physical, and psychological factors impacting breastfeeding initiation, continuation, and
exclusivity for low-income and vulnerable populations.
The project proved feasible with the potential to be replicated. It enhanced breastfeeding support for mothers in this Florida community-based clinic, not just African American women. Staff
verbalized a sense of purpose, regularly sharing about various mastery and vicarious experiences,
social persuasions, and measures to minimize physical or physiological concerns. In addition, and
most pertinent, this project renewed the focus on breastfeeding at this community-based clinic system that regularly serves vulnerable mothers and families.
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CHAPTER 25
Strangulation Related to
Intimate Partner Violence:
Caring for Vulnerable
Women in the Emergency
Department
Jeanne Parrish
OBJECTIVES
At the end of this chapter, you will be able to:
1. Explain the dynamics of the relationship involving intimate partner violence.
2. Describe potential injuries from a strangulation attack.
3. Discuss a comprehensive plan of care for victims of strangulation seen in the emergency department.
NOTE
While intimate partner violence affects both sexes, strangulation is predominantly a crime involving a
male perpetrator and female victim. As this chapter is specifically about strangulation, male pronouns
are used in reference to the perpetrator and female pronouns are used in reference to the victim.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
277
278
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Chapter 25 Strangulation Related to Intimate Partner Violence
Intimate Partner Violence
Intimate partner violence (IPV) is an epidemic in the United States. In 2010, the Centers for Disease Control and Prevention (CDC) began the National Intimate Partner and Sexual Violence
Survey, which is an ongoing national telephone survey to ascertain the prevalence of IPV and sexual violence in the United States (CDC, 2010). Initial data from the survey indicates that nearly
36 percent of women in the United States have experienced IPV (CDC, 2010). While this survey’s
methods make the data less than accurate, it is likely that these numbers are underreported.
The Dynamics of IPV
IPV is about power and control. The batterer tries to gain complete power and control over the victim. This is an insidious process and may not involve physical violence, but rather emotional abuse
in the beginning. Fleury, Sullivan, and Bybee (2000) found that women were in relationships with
their partners an average of 1.2 years before the first physical assault occurred.
The batterer is not violent at all times. He is often charming, loving, and attentive, so much so
that persons outside the home may have a hard time believing he is violent. The violent episodes
are frequently seen by the victim as an alternative persona, and victims will say life would be wonderful if that persona would just go away (Mouradian, 2007). It is a difficult decision to let go of
the regular persona, the one the victim fell in love with, because of fear of the alternate. This can
be further complicated by frequency of the alternate persona’s appearance as well as the ongoing
dynamics of the relationship (Mouradian, 2007).
The IPV relationship tends to be cyclical around the violence (Walker, 1979). There is a honeymoon phase immediately after the violence when the batterer is apologetic and is once again attentive and loving. He is the epitome of his “normal” persona during this time. Then the couple will
move in to the tension-building phase, which will build until violence erupts, immediately putting
the couple back into the honeymoon phase (Walker, 1979). The cycle varies in length for each occurrence and in each relationship. It may take hours to complete a cycle, or it may take a year or more.
Commonly, the cycle shortens with every occurrence, and the violence escalates in severity. Many victims of long-term abuse also report an eventual loss of the honeymoon phase and experience merely
a short period of decreased tension at the beginning of the tension-building phase (Walker, 1979).
Many have found themselves in unhealthy relationships, frequently staying too long. Partners
are not perfect, imperfections forgiven and compromises arranged. Societal and cultural pressures
are often present to stay together, particularly if the couple is married and/or have children together. These same dynamics operate in a relationship characterized by IPV (Mouradian, 2007).
The most dangerous time for a woman in an IPV relationship is when she tries to leave
(Fleury et al., 2000). When she reaches this point, exiting must be planned very carefully to ensure her safety and the safety of any children. When a victim presents to the emergency department (ED) or even a clinic and trusts enough to disclose IPV, health providers need to respect her
choices. Though it may be frustrating to providers, the victim is likely to make the correct decisions for the best opportunity for survival at that time.
Power and Control
The Power and Control Wheel, developed as part of the Duluth Model (Pence & Paymar, 1993) has
been used for decades as a way to explain the dynamics of an IPV relationship. The wheel is broken down into octants, each describing a specific method used to acquire and maintain power and
Intimate Partner Violence
279
control by a batterer. The octants are intimidation; emotional abuse; isolation; minimizing, denying,
and blaming; using the children; using male privilege; economic abuse; and coercion and threats.
Further, these methods are not introduced all at once or even from the beginning of the relationship. Rather, they come into play insidiously and slowly (Pence & Paymar, 1993).
Intimidation
Intimidation is the use of looks, actions, or gestures to control behaviors. This is particularly effective once physical violence has occurred, but it can be accomplished prior to that with destruction
of property, abuse of pets, or merely displaying weapons (Pence & Paymar, 1993).
Emotional Abuse
Emotional abuse is accomplished by humiliating the victim, attempting to lower her self-esteem by
calling her derogatory names, playing mind games, and making her feel guilty (Pence & Paymar, 1993).
Isolation
The victim is isolated from her family and friends and the perpetrator controls where she goes and
whom she sees or talks with. It can also include controlling what she reads and how she accesses
information. Jealousy is frequently used to justify this isolation (Pence & Paymar, 1993).
Minimizing, Denying, and Blaming
The batterer often minimizes the abuse, negating serious consideration to her concerns about it.
He may say that the abuse never happened or blame her for it (Pence & Paymar, 1993).
Using Children
Children are a powerful method of control. The batterer may threaten to harm the children or take
them away from her. He may make her feel guilty about the children, or use them to relay messages
to her during a separation (Pence & Paymar, 1993).
Using Male Privilege
Many batterers will take advantage of traditional gender roles and assume the role of head of household to the point that he defines the roles of the males and females in the house, reducing the victim to a servant (Pence & Paymar, 1993).
Economic Abuse
The batterer may control all the money, not put her name on accounts, allow her to have a job, or
if she does have one, take her paycheck. He may require her to ask for money if needed, and will
not share details of the couple’s finances (Pence & Paymar, 1993).
Coercion and Threats
The batterer will make and even carry out threats to coerce the victim into a desired behavior, including leaving the relationship, calling social services, or even committing suicide. He may even
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force her to engage in illegal activities so that he can use that knowledge against her in the future
(Pence & Paymar, 1993).
▸
Strangulation
Strangulation is an attack method used later in an IPV relationship, on average 5 years into a relationship. There are two methods of strangulation. Manual strangulation generally refers to strangulation done with the hands. However, other body parts such as the foot, forearm, leg, or arm can
also be used. Ligature strangulation is using an object, usually cord-like, to apply pressure to the
neck (Hawley, 2013).
In an ongoing IPV relationship, the level of violence tends to escalate slowly (Wilbur et al., 2001).
An estimated 38 percent of women are killed as a result of IPV throughout the world (World Health
Organization [WHO], 2017). In the United States, 64 percent of female homicides are the result of
IPV (Violence Policy Center, 2017). Glass et al. (2008) found that women who survived a strangulation attack were seven times more likely to be killed by their intimate partner. Once strangulation
occurs, it is a harbinger of potential lethality (Glass et al., 2008). When a health provider sees a victim after surviving a strangulation attack, it may be the last opportunity to intervene before death.
Strangulation Research
The Red Wing Studies
In 1943, Rossen, Kabat, and Anderson published a study detailing the observations of human men
who were strangled using a device much like a blood pressure cuff affixed to their necks. The cuff
would inflate to 600 mmHg in one-eighth of a second, providing uniform and instantaneous pressure to the lower third of the neck. This device was first tested on the authors, then used in experimentation on adult male inmates, adult male schizophrenia victims, and adolescent male inmates
(Smith, Clayton, & Robertson, 2011). These experiments were done prior to the Nuremberg Code
and are not reproducible owing to ethical concerns today. The findings of this highly controversial research are described next.
Ocular Findings. Most of the study subjects demonstrated fixation of their eyes at midline after
about 5–6 seconds, with loss of consciousness following 0.5 to 1 second after this fixation. Some
of the subjects had an upturning of the eyeballs at the time of loss of consciousness. The subjective
accounts of this included blurred vision, a rapid narrowing or graying of the field of vision, and
complete loss of vision. Some subjects also reported seeing streaks, spots, or flashes of light (Rossen
et al., 1943). It is important to ask the victim what she saw during an attack, as her response can
help to determine if strangulation occurred.
Paresthesias. There were a variety of paresthesias reported by the subjects. These included numbness, tingling, and shooting pains of varying degrees of severity even in the same subject at different
experimentation sessions. Further, every subject had a release button in their hand to release the
pressure themselves, and none did. Some stated they did not realize they were holding the release
anymore, others that they did not want to be bothered, and a few stated they were physically incapable
of moving their hand and fingers to press the release button. Yet, every subject maintained hold on
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281
the release button throughout the experiment, even when unconscious (Rossen et al., 1943). Asking
the victim what she felt during the attack may help establish that a strangulation attack occurred.
Loss of Consciousness. Every subject in the study lost consciousness at the 5–6 second mark.
There were a variety of behaviors observed upon regaining consciousness. Some were dazed and
confused, some excited and euphoric, while others were frightened and tense. These behaviors
were transient, lasting approximately 15–20 seconds. Some subjects insisted they did not lose
consciousness (Rossen et al., 1943). This is particularly disturbing as the risk of lethality from a
strangulation event is markedly higher with loss of consciousness (Armstrong & Strack, 2016).
Taking a careful history helps to determine if there was a probable loss of consciousness, despite
the victim’s denial.
Convulsions. Every study participant was noted to have tonic-clonic movements immediately
following the release of pressure in the cuff, returning circulation to the brain. This action was
performed as soon as the victim lost consciousness. The convulsions were noted to last 6–8 seconds. Some subjects reported gaining consciousness while convulsing and were aware of their body
movements but were unable to control them. Convulsions were not observed if the cuff pressure
was released before the loss of consciousness (Rossen et al., 1943). It is important to ask the victim
about potential seizure activity, either experienced or reported by a witness.
Incontinence. In the prolonged arrest experiments, 7 out of 11 subjects had urinary incontinence
15–40 seconds after cuff inflation. Two also had fecal incontinence 30 seconds after losing consciousness (Rossen et al., 1943). Asking the victim about incontinence may be embarrassing, so
questioning must be done in a sensitive manner.
The Working Group on Human Asphyxia
Another research study was The Working Group on Human Asphyxia (Sauvageau et al., 2011).
While ethical concerns prohibit replication or expansion of the experimentation done in the Red
Wing studies, the advent of technology in recent years has led to increased photographic and video
documentation. The Working Group on Human Asphyxia analyzed 14 filmed asphyxiations (Sauvageau et al., 2011). While these asphyxiations were all by hanging, the observed agonal responses
were consistent in each. Loss of consciousness was noted at about 10 seconds, with convulsions
observed at about 14 seconds. The subjects demonstrated both decerebrate posturing and onset
of deep abdominal respiratory efforts, in which respirations were audible when sound was available, at 19 seconds. Decorticate posturing was noted at about 38 seconds, loss of muscle tone at
77 seconds, and the end of deep abdominal respiratory efforts at 111 seconds. The last muscle movements were noted at about 252 seconds (Sauvageau et al., 2011). The manifestation of known abnormal posturing indicative of severe brain injury in less than a minute clearly demonstrates how
quickly asphyxiation, be it from hanging, suffocation, or strangulation, can cause debilitating injury and death (Armstrong & Strack, 2016).
Factors of Lethality. There are four factors that affect lethality in a strangulation attack. A minor
change in any of these factors can affect lethality. The factors are location on the neck, amount of
pressure applied, surface area of the neck, and duration of pressure (Hawley, McClane, & Strack, 2001).
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Location on the Neck. The location on the neck is important because the neck has many critical structures and is one of the most vulnerable areas of the body. Different structures will be
affected depending on the location where the pressure is applied. For example, an upper neck
attack may involve the hyoid bone whereas a lower position may affect the cricoid cartilage. Neck
musculature and the amount of adipose tissue have a direct affect as well. Direct pressure on the
carotid artery ganglion will cause immediate cardiac dysrhythmia, resulting in cardiac arrest
(Hawley et al., 2001).
Surface Area
Similarly, the surface area of the neck is a factor of lethality. The larger the surface area involved,
the more structures could potentially be injured. However, it is harder to maintain pressure over a
larger surface area (Armstrong & Strack, 2016; Hawley et al., 2001). A good example of this is the
damage caused by a cell phone cord versus a scarf or belt.
Amount of Pressure
The amount of pressure applied to the neck is also a critical factor. While the required pressure
to cause injury is low, the level of sustained pressure is most critical. While extraordinary pressures could be applied briefly, it likely will not be sustained if the victim uses defensive maneuvers
(Hawley et al., 2001).
Duration of Pressure
Finally, the duration of the pressure is a determinant of lethality. The longer the pressure is applied, the more damage is done. If the event lasts a few seconds, the victim will likely survive.
None of these factors individually will determine the lethality of a strangulation attack. Rather,
it is the combination of all four that will determine whether a victim survives the attack (Hawley
et al., 2001).
Effects of Strangulation on Body Systems
Eight of the eleven body systems are present in the head and neck and could potentially be affected
by a strangulation attack. Some will likely leave temporary injuries with minimal threat to life; others
could have the potential of permanent injury and death.
The Skeletal System
The skeletal structures of the neck consist mostly of the vertebrae protecting the spinal column.
Typically, there is not enough velocity generated during a strangulation attack to affect the vertebrae (Green, 2013). However, strangulation frequently is seen in conjunction with other physical violence and so vertebral injury should always be considered (Stapczynski, 2010). The hyoid
bone is the only independent bone in the body and serves as a fulcrum for many neck muscles, including those controlling tongue movements. The hyoid bone is thin and susceptible to fracture at
pressures of only 7 pounds per square inch (psi; Lebreton-Chakour et al., 2013). However, hyoid
fractures are not commonly seen in strangulation survivors and only in about one-third of persons
killed by strangulation (Hawley et al., 2001).
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283
Integumentary System
The integumentary system involves the skin and associated structures that cover the neck. This is
the most common area inspected for evidence of a strangulation attack. However, marked injury
to the skin is present in only an estimated 15 percent of cases (Strack, McClane, & Hawley, 2001).
It is possible to sustain fatal injury from strangulation without any marks on the skin (Hawley
et al., 2001).
The most common marks on the neck are bruises, scratches, and abrasions. Patterned injuries
are particularly helpful in the legal system and should be photographed, if possible. Ligature marks
can give an indication of what type of ligature was used. Manual strangulation may leave thumb
and fingerprint bruises (Hawley, 2013; Hawley et al., 2001). You may also see self-inflicted defensive wounds (Hawley, 2013; Hawley et al., 2001). It is important to get as detailed a history as you
can. It is important to look within the neck folds, as these can hide ligature marks, as well as the
face, head, and shoulder areas for injury.
A classic strangulation-related injury may include partial tearing of the sternocleidomastoid
muscle. This is the largest muscle in the neck and is primarily responsible for turning the head
from side to side. It is attached to both the sternum and skull. Pressure applied to the neck shortens the length that this muscle can extend, resulting in tearing at the insertion site of the muscle into the skull, just below and behind the ear. If this occurs, bruising will be visible behind the
pinna (Hawley, 2013).
Abrasions to the inferior aspect of the chin are also associated with strangulation events. These
occur from friction related to rapid side-to-side movements of the head to get the chin under the
mechanism of strangulation (Hawley, 2013), or from the natural cervical flexion defensive mechanism (Stapczynski, 2010). This is an injury that may not be noted unless the victim is instructed
to look up and expose this area to visualization.
Petechiae are the micro-hemorrhages seen under the skin where capillaries rupture. They are
small and flat, and do not blanch. They are most commonly seen in the mucous membranes and
around the eyes but can be present throughout the face and scalp. Petechiae are an important finding. Petechiae resulting from a strangulation event will only be found above the point of strangulation on the neck (Ely & Hirsch, 2000). While petechiae do not prove strangulation independently,
the presence of petechiae indicates a high risk for lethality (Armstrong & Strack, 2016).
The Immune System
The lymphatic system is prominent in the neck. Blunt force trauma to the lymphatic system can
result in hemorrhage or edema. Blocked flow through the lymphatic system can result in lymphedema and/or lymphadenopathy. While rare, severe lymphedema could potentially compromise
the victim’s airway. Lymphatic hemorrhage is viewable on autopsy. On a living person, it may not
be detectable except by magnetic resonance imaging (MRI; Christe et al., 2010). It typically resolves
in time but can be a source of discomfort and create a sense of swelling.
The Muscular System
Blunt force trauma may cause torn, contused, and/or edematous neck muscles (Hawley, 2013;
Rayamane et al., 2015). This is a common cause of neck pain and a sense of swelling for the victim. Tracking measurements of the victim’s neck circumference can gauge the extent of swelling
that is occurring.
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Chapter 25 Strangulation Related to Intimate Partner Violence
The Gastrointestinal System
The gastrointestinal system begins with the mouth, which is a site for various possible injuries. The
teeth may be injured and/or may cause injury to the buccal membranes and lips. The tongue may
also be bitten. There may also be frenulum injuries. Careful inspection of the oropharynx, mouth,
lips, and tongue should be done (Hawley, 2013). In addition, the mucous membranes of the oropharynx are a site to check for petechiae. The esophagus sits behind the trachea and in front of
the vertebral column. Direct frontal pressure effectively sandwiches the esophagus between these
rigid structures and can cause contusion to the tissues resulting in painful and/or difficult swallowing (Hawley, 2013).
The Respiratory System
The respiratory system is rarely affected by a strangulation event. The victim will frequently report feeling breathless, usually due to hypoxia in the brain, not to respiratory trauma. It takes at
least 31.5 psi of pressure to injure the tracheal cartilaginous rings; however, the trachea may be occluded with just 22 psi at the level of the thyrohyoid membrane (Khokhlov, 2001). This is rare, but
if it occurs, it can be lethal. Rarely, the victim may experience pulmonary edema if there was occlusion of the airway (Armstrong & Strack, 2016; McClane, Strack, & Hawley, 2001). Blunt force
trauma to the adjacent tissues can result in airway swelling, hemoptysis, and acute exacerbation of
airway disease, such as asthma (Stanczynski, 2010). Severe laryngeal edema to the point of airway
compromise can take hours to manifest after the attack, but even minor swelling of the airways
can affect the functionality of the epiglottis, putting the victim at risk for aspiration and pneumonia (Stanczynski, 2010).
The Cardiovascular System
Strangulation is essentially the cutting off of circulation to a part of the body. In a strangulation attack, circulation to the brain is affected. The brain circulation is made up of the carotid arteries,
vertebral arteries, vertebral veins, and jugular veins. The vertebral and carotid arteries carry oxygenated blood to the brain, with the vertebral arteries supplying approximately 20 percent of the
blood supply, and the carotids carry 80 percent, or 40 percent in each carotid artery (Clarot, Vaz,
Papin, & Proust, 2005).
It takes very little pressure to cause damage to the intimal wall of the carotid artery. This damage can lead to carotid dissection, which essentially cuts off 40 percent of the blood supply to the
brain (80 percent if bilateral), resulting in a catastrophic stroke. Alternatively, vessel damage can
result in clotting that can then travel to the brain and cause a thrombotic stroke. This may manifest quickly or slowly—over hours to days (Clarot et al., 2005). With sufficient pressure applied
such as to crush the artery, acute carotid dissection or thrombosis can occur, leading to death by
catastrophic stroke in as little as 15–20 seconds (Hawley, 2013).
Alternatively, it takes as little as 5.5 psi of pressure to occlude the carotid artery (Khokhlov,
2001). This essentially stops 40 percent of circulation to the brain immediately. Unconsciousness
will occur in as little as 10 seconds, giving the victim very little time to fight back (Hawley, 2013).
The Neurological System
The greatest nonfatal damage done by a strangulation attack is to the neurological system. It is frequently the most difficult to assess. Impeding circulation to the brain results in hypoxia. Continued
The Strangulation Examination
285
hypoxia results in anoxia. Anoxic cells are dead cells. This process is asphyxiation, resulting in
permanent, irreparable brain damage at the cellular level.
Petechiae occur in the brain before they occur in the mucus membranes or on the skin. It takes
4.4 psi to occlude the jugular veins (Khokhlov, 2001). If sufficient pressure is applied to occlude
the jugulars, but not the carotids, blood continues to pump into the brain, but is prevented from
returning. This causes an increase in vascular pressures, which then rupture the thinnest, weakest
area of vasculature, the capillaries, resulting in a micro-hemorrhage at the site of the rupture (Ely &
Hirsch, 2000). Prolonged jugular compression leads to vascular congestion, and unconsciousness
will occur after about 2 minutes, during which time the victim frequently demonstrates a significant effort to escape (Hawley, 2013). If she is unsuccessful and the pressure is maintained, death
occurs at about 4 minutes (Hawley, 2013).
Petechiae appear on the skin after 20–30 seconds of sustained bilateral jugular occlusion
(Hawley, 2013). They occur in the brain tissues first. These hemorrhages within the brain itself
are toxic and result in further loss of brain cells. These hemorrhages, which are not reabsorbed
by the body but are walled off and preserved, are still present at the victim’s death (Hawley, 2013).
Petechiae in the brain are not detectable outside an MRI but you can assume they are present if
there are petechiae on the skin and/or mucous membranes. The presence of petechiae, while not
independently diagnostic of a strangulation event, is an indication of high lethality risk in a strangulation event (Christe et al., 2010; Stapczynski, 2010).
Brain damage is a game of roulette. The victim may or may not demonstrate any deficits after a
single strangulation attack. However, after repetitive attacks, many victims develop frequent headaches, difficulty with focus, and memory loss (Smith, Mills, & Taliaferro, 2001). In addition to the
damage to the brain, there are numerous nerves innervating the neck. Blunt force trauma to these
nerves can cause edema and inflammation, resulting in temporary, and sometimes permanent,
voice changes and dysphagia as well as facial droop and ptosis (Green, 2013).
▸
The Strangulation Examination
The victim presenting for care related to a strangulation attack in the setting of IPV requires a careful,
systematic, and empathic approach. The immediate concern is to rule out potential life-threatening
injuries. Cervical spine precautions should be considered, particularly if there was additional trauma,
as is seen in 97 percent of strangulation attacks (Green, 2013; Stapczynski, 2010).
A careful and detailed history is crucial. Frequently, the victim will not demonstrate external
signs of trauma. Take note of the victim’s reported symptoms, and ask about others. Traumatized
victims can be distracted by one injury and unaware of another. Many EDs across the country have
adopted standardized strangulation assessment sheets to aid in gathering a full and complete history in strangulation events. If available, a forensic nursing service should be utilized to collaborate
and ensure careful documentation of the victim’s history and injuries.
Any victim who reports a loss of consciousness, experienced visual changes during the event,
has petechiae or neck tenderness or swelling, was incontinent during the event, has neurological
signs or symptoms, has subcutaneous emphysema, or has moderate to severe dysphonia and/or
dysphagia should have radiological studies ordered. The victim with mild dyspnea, dysphagia, or
dysphonia should have, at minimum, a direct observation exam of the larynx using a fiberoptic laryngoscope (Armstrong & Strack, 2016, Stapczynski, 2010).
Endorsed by the National Medical Advisory Committee, Smock and Sturgeon (2016), in partnership with the Training Institute on Strangulation Prevention (2017), recommend, at minimum,
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Chapter 25 Strangulation Related to Intimate Partner Violence
that the victim should have a computed tomography (CT) of the neck to check for soft tissue injuries in addition to a CT angiogram to evaluate the vasculature and bony structures. Magnetic
resonance angiogram (MRA) or MRI of the neck is less sensitive than CT angiogram for evaluating vasculature but best for soft tissue trauma. MRA/MRI of the brain is the most sensitive for
detecting anoxic brain injury and intracerebral petechiae. Carotid Doppler ultrasound is not recommended (Smock & Sturgeon, 2016).
These victims should be monitored in the ED or hospital for at least 12–24 hours (Stapczynski,
2010). If the victim does not have any of these critical assessment points, and has someone who
will stay with her and is capable of reliably monitoring the victim, the victim can be sent home
after evaluation and careful documentation of history and physical exam findings. All strangulation victims should have a follow-up assessment in 48–72 hours, medically and forensically
(Armstrong & Strack, 2016; International Association of Forensic Nurses, 2016).
While the victim is being monitored in the ED, it is imperative that social services be involved
with the victim, both to discuss community resources available to her as well as to put together a
safety plan for the victim and any children in the relationship. Many IPV victims develop a myriad
of psychological issues including personality changes, depression, insomnia, nightmares, anxiety,
suicidal ideations, and post-traumatic stress disorder. Surviving a strangulation event increases the
incidence of these issues, particularly if the victim has survived multiple prior strangulation attacks
(McClane et al., 2001; Smith et al., 2001).
CASE STUDY 251: HIDDEN STRANGULATION
Caroline is a 68-year-old woman who presents to the ED arriving via emergency medical system at
11 p.m. She reports being attacked by her husband this evening around 8:00 p.m. She states she was
beaten and sexually assaulted.
Jessica, DNP, FNP, was assigned to see Caroline. Upon entering the room, Jessica immediately
notices the victim had petechiae across her entire face and inner eyelids. She listens carefully to the
victim’s description of the event. Caroline describes her husband coming in and pulling her away from
the computer, insisting that they needed some quality time together. He then proceeded to hit her
repeatedly, throwing her onto the bed and sexually assaulting her. At one point, he pushed her down
and she felt like she could not breathe. She reports a long history of IPV but never this extreme. She
really thought she was going to die tonight, which is the reason she is seeking care now. Caroline is
visibly shaken, unable to sit still. Her history is disjointed and does not flow well.
Jessica is concerned that Caroline may have been strangled. She ascertains that Caroline cannot
remember the entire event, including pockets of time. She reports a change in her voice, which she
attributes to screaming. She reports shortness of breath, which she thinks is her COPD acting up as a
result of the attack. She reports nausea, but she attributes this to the stress of the event. Her neck hurts,
but no more so than the rest of her body.
On physical exam, Jessica notes copious contusions to the victim’s head, neck, back, abdomen,
and extremities. There is bruising to the back of the head and ears, as well as bruising behind the right
ear. There is a small subconjunctival hemorrhage to the right eye. There is an abrasion present on the
tip of the nose, and a bite wound to the side of the tongue.
Jessica consulted the Forensic Nursing Team to see the patient and orders neurological and
oxygen monitoring. She also orders a CT angiogram of the neck, abdomen, and pelvis. She x-rays the
victim’s right elbow because of a large contusion and decreased range of motion.
Conclusion
CASE STUDY 251: HIDDEN STRANGULATION
287
(continued)
The Forensic Nursing Team further assesses Caroline after her visit to CT. They perform a thorough
head-to-toe examination and photograph the victim’s injuries, as well as perform a sexual assault
examination with evidence collection. The victim’s husband has been arrested, but the victim is fearful
he will be able to make bail quickly, returning to their home.
Caroline’s radiological studies are negative and she has now been in the ED nearly 18 hours. The
ED social worker is able to help facilitate placement for the victim at the local domestic violence shelter,
5 miles from the ED. The shelter staff are well trained in the warning signs of strangulation injury and
can monitor her carefully. Carolyn is discharged to the shelter with instructions to call 911 and return
immediately if she develops any neurological changes or shortness of breath, or if her voice gets worse.
The Forensic Nursing Team schedules a follow-up appointment 3 days from the event. At that
appointment, Caroline’s subjective complaints and petechiae are improved, but the contusions and
bruising are markedly worse. She has had the opportunity to reach out to advocacy groups in the
community and come up with a safety plan for herself and her pets as well as to explore her legal
options. She is in a much better frame of mind and more emotionally stable.
Caroline’s husband faces multiple felony charges, including strangulation and marital rape. When
faced with the medical evidence against him, he agrees to a plea bargain. Caroline files for divorce and
completely separates herself from him, except for the adult children they had in common. She enrolls
in paralegal school. She secured her first position as a paralegal when the case was finally settled.
▸
Conclusion
A victim of a strangulation event should receive immediate, thorough evaluation and care in the
ED, including meticulous charting of the victim’s reported history and physical findings. As of this
writing, 43 states in the United States, one territory, and the federal government now have laws
specifically addressing strangulation attacks. As there is frequently little external evidence of this
potentially lethal crime, the medical record is crucial evidence to convict the perpetrator of strangulation. However, unless your state of practice specifically has mandatory reporting laws for domestic violence, it is a Health Insurance Portability and Accountability Act violation to contact the
police without the victim’s permission. Your record should be just as thorough regardless of the
victim’s willingness to involve law enforcement because she may change her mind in the future.
A conviction will result in a separation of the perpetrator from the victim, giving her a chance to
extract herself and any children from the situation before it becomes lethal. It also allows community
systems to offer resources and counseling to the victim and any children in the home, which is crucial to breaking the cycle of violence in families (Holt, Buckley, & Whelan, 2008). In many states the
perpetrator will undergo a batterer’s intervention program as part of detention requirements. Once
released, in most states, the perpetrator will be a felon and unable to legally own or possess firearms,
potentially reducing the risk of future homicides. He will also be in the legal system as a known perpetrator so that if other events do occur in the future, there will be a history to substantiate his behaviors.
Many of the mass killers and serial killers in the United States have a history of IPV and specifically strangulation. Strangulation in the setting of IPV is a sign of aberrant behavior with the
potential to be catastrophic, though this hypothesis will require further evaluation and research.
If true, intervention for IPV and particularly strangulation could potentially prevent innumerable
future homicides beyond the immediately identifiable victim.
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Smock, B., & Sturgeon, S. (2016). Recommendations for the medical/radiographic evaluation of acute adult, non-fatal
strangulation. Retrieved from http://www.strangulationtraininginstitute.com/wp-content/uploads/2015/07
/Recommendations-for-Medical-Radiological-Eval-of-Non-Fatal-Strangulation-v17.9.pdf
Stapczynski, J. S. (2010). Strangulation injuries. RELIAS. Retrieved from http://www.ahcmedia.com/articles/19950-strangulation
-injuries
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issues. Journal of Emergency Medicine, 21(3), 303–309.
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.strangulationtraininginstitute.com/file-library/strangulation-legislation-chart-updated-5-9-17-docx
Violence Policy Center. (2017). When men murder women: An analysis of 2015 homicide data. Retrieved from http://www
.vpc.org/studies/wmmw2017.pdf
Walker, L. E. (1979). The battered woman. New York, NY: Harper & Row.
Wilbur, L., Higley, M., Hatfield, J., Surprenant, Z., Taliaferro, E., Smith Jr., D. J., & Paolo, A. (2001). Survey results of women
who have been strangled while in an abusive relationship. Journal of Emergency Medicine, 21(3), 297–302.
World Health Organization. (2017). Violence against women. Retrieved from http://www.who.int/mediacentre/factsheets
/fs239/en/
CHAPTER 26
The Effects of Gun Trauma
on Rural Montana Healthcare
Providers
Margaret Anne Bortko
OBJECTIVES
At the end of this chapter, the reader will be able to:
1. Discuss various viewpoints on gun ownership and regulation.
2. Describe the unique needs and vulnerability of Montana’s rural healthcare providers related to
gun trauma.
3. Identify variables contributing to vicarious trauma among rural healthcare providers.
▸
Introduction
This chapter discusses vulnerability among rural healthcare providers in caring for victims of gun
trauma in rural Montana. Several variables are explored involving gun cultures and the challenges
of healthcare delivery in rural communities. A case study is presented, demonstrating the effect
on nonphysician clinicians involved in a mass shooting incident in a rural eight-bed critical access hospital (CAH).
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 26 The Effects of Gun Trauma on Rural Montana Healthcare Providers
Public Safety Versus Second Amendment Rights
The United States has a running and unresolved national debate concerning the Second Amendment’s right to bear arms versus firearm regulation and public safety. Polarized stances are displayed by the powerful lobbying of the National Rifle Association (NRA), various citizens’ groups,
and multiple healthcare provider organizations. Lobbyists have extremely divided agendas on firearms and public safety.
While government officials and policy makers debate over policy, regulation, and constitutional
rights, firearm deaths and injuries continue unabated. Firearm-related violence is an endemic problem in the United States with over 30,000 deaths and 66,000 injuries resulting from gun violence
annually (Centers for Disease Control and Prevention [CDC], 2017). Penal and healthcare systems
are intrinsically involved with financial costs that are incalculable (Branas, Richmond, Culhane, Ten
Have, & Wiebe 2009; Frattaroli, Webster, & Wintemute, 2013; Hemenway, 2011; Makarios & Pratt,
2012; Webster et al., 2012; Weiner et al., 2007). In 2005, medical cost estimates involving gun fatalities were $112 million. In 2013, the medical costs associated with nonfatal firearm injuries were
estimated at $599 million, while the costs associated with work loss was estimated at $40.5 billion
(Fleegler, Lee, Monuteaux, Hemenway, & Mannix, 2013).
The Public Versus the NRA’s Agenda
The Dickey Amendment, an appropriations bill in 1996, prohibited the CDC from funding research
on gun violence because of its potential political use (Jamieson, 2013). In 2015, despite the urging of President Obama and congressional members to lift the ban on CDC research funding and
the public outcry after tragic mass shootings were occurring on a regular basis at schools, college
campuses, churches, clubs, movie theaters .and shopping centers, the controversial 1996 Dickey
Amendment persists in response to heavy lobbying from the NRA (Ferris, 2015). Prior to the 2015
amendment extension, former Arkansas Representative Jay Dickey coauthored an opinion piece
in 2012, with Mark Rosenberg, former director of the National Center for Injury Prevention and
Control at the CDC (n.d.). Dickey reversed his initial stand of 1996, stating there is a need for research and examining gun violence to create evidence-based interventions, just as the federal government did with motor vehicle fatalities (Dickey & Rosenberg, 2012).
Owing to the CDC ban, researchers often find it difficult to collect, analyze, and report on
data that is crucial to evidence-based decision making and policy formation. Despite the appropriations amendment of 1996 and its recent renewal, firearm-related death and injury statistics are
gathered and analyzed by many organizations and universities to encourage the formation of public health policy (Fleegler et al., 2013; Tarr, 2013). Professional healthcare organizations, such as
the American Academy of Pediatrics (AAP), the American Nurses Association (ANA), the Emergency Nurses Association (ENA), and the American Academy of Nurse Practitioners (AANP), have
released position papers on gun violence, acknowledging that the associated morbidity and mortality risk is a public health concern needing legislative attention for research funding, gun regulation, gun safety, gun control, and mental health reform (AAP, 2013; ANA, 2016; ENA, 2013; Friel
et al., 2000). In April 2016, the American Public Health Association (APHA) and over 100 healthcare and scientific organizations representing over 1 million members submitted a letter to the U.S.
government urging an end to the restriction on gun-related research and funding for the CDC to
investigate critical issues of gun violence (APHA, 2016).
Nonetheless, the NRA, as a political action group (PAC), has great financial power, influencing agendas at both national and state levels. In the 2016 national election, the NRA spent at least
Public Safety Versus Second Amendment Rights
293
$50.3 million supporting the gun agenda in the presidential race and six Senate seats (Spies &
Balcerzak, 2016). The Dickey Amendment remains today as it was written in 1996.
Research Questions on Gun Culture and Citizens’ Vulnerability
There are many unanswered questions concerning the effectiveness and regulation of gun ownership and its relationship to gun violence. Some questions are:
■
■
■
■
■
■
■
■
■
■
■
Does gun possession increase or decrease one’s sense of vulnerability?
Should healthcare providers be prohibited from discussing gun safety with patients and inquiring about guns in the home?
How does gun possession encourage or discourage gun violence?
Will regulation decrease criminal gun use?
Can mental health services reduce violent crime?
Are citizens safer in public areas when concealed weapons are carried?
Do gun-free zones increase the risk for criminal-only possession?
Are women safer as gun owners?
How do suicide rates and accidental deaths by gunshot compare between gun-friendly states
and highly regulated states?
Does the “open carry” of firearms in public places and gatherings intimidate and terrorize?
Do “good guys” with guns actually deter violence committed by “bad guys” with guns? (Modified from Frum, 2017)
Frum (2017) states that the theory of defensive gun use is difficult to prove or disprove owing
to its subjectivity. In 2015, 38 gun-related deaths and injuries were caused by toddlers with guns
(children under 3 years of age; Ingraham, 2015). The question remains: What is the best way to
keep children from accessing guns and unintentionally pulling the trigger that may result in death
or injury? Evidence-based research would enable the best solutions with possible appeal to both
sides of the issue—policy makers, business leaders, healthcare and public safety representatives,
or citizens groups.
The Gun Culture in Montana
Each state in the United States has its own set of gun regulations, dividing the country into states
with heavier regulations and those that are “gun friendly” with less regulation. Montana is an
example of a gun-friendly state with a strong and accepted gun culture. Almost 62 percent of
Montanans are gun owners, second only to Wyoming. There is a gun in 90 percent to 95 percent of
Montana homes (Marbat, 2013; Tarr, 2013). Purchasing a gun is uncomplicated. Montana has no
background checks, waiting period, or registration. There is no reporting of mental health information to the National Instant Criminal Background Check System database (NRA, 2014).
In Montana, there are no permits to purchase or licenses needed to sell or own a gun. There is
no restriction on the number of guns in a purchase, and there is no law regulating large-capacity
ammunition magazines or minimum age for rifles or long gun possession. No license is needed
for ammunition sales. No locking devices are required. Montana also restricts lawsuits against gun
manufacturers and dealers. There is no surrender of firearms with domestic violence restraint orders. Montana has no firearm or ballistic microstamping, nor reports for stolen guns (NRA, 2014).
Montana statistics demonstrate a strong belief in the right to own firearms. The 2011 National
Survey of Fishing, Hunting and Wildlife-Associated Recreation by the U.S. Fish and Wildlife Service
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Chapter 26 The Effects of Gun Trauma on Rural Montana Healthcare Providers
(USFWS) found that 150,000 hunters in Montana spent $165 million on guns and ammunition in
2011 (USFWS, 2012). The number of gun owners combined with less restrictive gun laws contributes to Montana having one of the highest rates of gun-related fatalities per capita in the country
(Fleegler et al., 2013).
Montana ranks fifth in gun fatalities per capita and third in gun-related suicides (CDC, 2017).
Women physically abused by their partners have a fivefold increased risk of being murdered if their
partner owns a firearm (Campbell et al., 2003). Montana exports guns recovered in out-of-state
crimes at a rate of 24.2 per 100,000 inhabitants compared to 14.1 per 100,000 inhabitants nationally (Trace the Guns, 2010).
Rural residents are twice as likely to die from unintentional injuries as their urban counterparts and are at a significantly higher risk of death by gunshot (National Rural Health Association,
2008). Though seemingly removed from urban gang-related violence, Montana is a state with a high
per-capita rate of gun fatality, 15.8 per 100,000 compared to 10.3 per 100,000 nationally, with some
of the highest rates of gun-related suicides, domestic violence, accidental shootings, and hunting
accidents (CDC 2017; Fleegler et al., 2013).
▸
Vicarious Trauma Among Healthcare Providers
Healthcare providers who work with victims of gun trauma bear witness to the carnage and rarely
walk away unscathed. Sabo (2011) discusses this phenomenon as vicarious trauma (VT), which
may trigger pathological responses. VT, compassion fatigue (CF), and resiliency have been examined among nurses and physicians working with vulnerable populations and in emergent trauma
situations, describing ongoing exposure and recurring engagement with trauma as contributing
to vulnerability among healthcare providers (Bortko, 2014; Dominguez-Gomez & Rutledge, 2009;
Flarity, 2011; Sabo, 2006, 2011; Woolhouse, Brown, & Thind, 2012).
Studies among urban nurses, physicians, and counselors at risk for VT have been conducted by
numerous researchers (Brysiewicz & Bhengu, 2000; Hooper, Craig, Janvrin, Wetsel, & Rimes, 2010;
Martin, 2006; Nimmo & Huggard, 2013; Woolhouse et al., 2012). In a study of urban emergency
nurses, Dominguez-Gomez & Rutledge (2009) observed that 33 percent of these nurses met the
criterion for a diagnosis of secondary traumatic stress and 85 percent reported at least one symptom in the previous week. There is, however, limited research on rural healthcare providers and VT.
A Culture of Toughness and Stoicism
Healthcare providers are frequently expected to display the culture of toughness and bucking up.
These providers may exhibit callous exteriors and gallows humor for “emotional concealment”
(Brysiewicz & Bhengu, 2000). There is a sense of pride and stoicism that may not allow these healthcare providers to acknowledge how they are affected by the horrific experiences they often face.
Furthermore, the ethics of confidentiality may prevent the discussion of a critical event. This professional culture contributes to their vulnerability.
Repeated Exposure
Tabor (2011) describes VT as resulting from cumulative, long-term stress specifically from repeated,
direct engagement with trauma victims. While healthcare providers may demonstrate resilience when
confronted with traumatic experiences (Headington Institute, 2014), repeated exposure can result in
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295
slow, insidious progression toward VT, especially among healthcare providers in higher-functioning
decision-making roles. Tabor’s concept analysis found that what differentiates VT from CF, burnout or post-traumatic stress disorder (PTSD) is that VT is associated exclusively with caring for
victims of violence and trauma. VT exerts powerful effects on the psychological and emotional aspects of a provider’s life, similar to the effects of PTSD experienced by victims. Vicarious trauma
can be truly debilitating, affecting all aspects of a person’s life, both professionally and personally.
Hallmark Signs of Vicarious Trauma
Sabo (2011) and Pearlman and McKay (2008) discuss the hallmark signs of VT and CF, which include anxiety, sadness, intrusive imagery, somatic complaints, loss of control, trust and independence issues, decreased capacity for intimacy, and relational disturbances. Martin (2006) found that
immersion into the sights, scents, and noise of violently traumatized victims results in vicarious
experiences of intentional acts of cruelty, unintentional trauma, and suicide.
▸
Trauma Care in Rural Montana
There is limited literature on the effects of providing trauma care among healthcare providers practicing in isolated, rural settings. Montana, as a predominately rural environment with a strong gun
culture, is an example of the challenges faced by healthcare providers in this kind of setting.
Description of Rural Montana
Montana is a vast state, covering 147,047 square miles with a population of less than 1 million. Population density is less than seven inhabitants per square mile, with only Alaska and Wyoming being less densely populated (National Rural Health Association, 2008). Most of Montana’s counties
are considered frontier due to the low population density, geographical isolation, and remoteness
from population centers with full healthcare services (Montana Healthcare Workforce Advisory
Committee, 2011). In addition, weather can be extreme, which may cause further isolation and contribute to a greater need for self-reliance. These statistics contribute to Montanans having a strong
sense of rugged individualism and fierce independence.
This background information describes Montana on several measures of rural health care.
Forty-eight of Montana’s 60 hospitals (80 percent) are federally designated CAHs. CAHs are federally designated rural hospitals established by the Centers for Medicare and Medicaid Services
(CMS). The designation was in response to the many rural hospital closures in the 1980s and 1990s.
Created by Congress in the 1997 Balanced Budget Act, it decreased financial obstacles with the goal
of maintaining rural healthcare access. Despite having less than 25 beds, CAHs must provide 24/7
emergency care (Rural Health Information Hub, 2015).
These hospitals range in size from 4 to 25 beds, often functioning without CT, surgery, or obstetrics. All offer emergency care and stabilization prior to transfer to a distant medical center for
definitive care. Nonphysician providers (NPs) include 471 advanced practice registered nurses
(APRNs) and 398 physician assistants (PAs), heavily relied on with physician shortages in rural
communities (Montana Healthcare Workforce Advisory Committee, 2011).
Provision of rural health care, provider shortage including recruitment and retention issues,
CAHs, and APRNs expanded scope of practice are discussed in many federal policies and professional journals (Barnason & Morris, 2011; Chang et al., 1999; Institute of Medicine [IOM], 2011;
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Chapter 26 The Effects of Gun Trauma on Rural Montana Healthcare Providers
Montana Healthcare Workforce Advisory Committee, 2011; National Rural Health Association,
2008). National policy and the Affordable Care Act look to the APRN as a solution to physician
shortages, access to quality care, and cost containment in health care (IOM, 2011).
Rural emergency departments (EDs) are far from the urban medical centers with highly trained
trauma teams. They are often staffed by NPs that perform the initial assessment and stabilization
of the trauma victim and then coordinate transfer for definitive care to a distant medical center.
APRNs and PAs serve in these roles in rural and frontier community EDs often practicing solo, in
severe isolation, and with limited resources. These providers often personally know the victims of
gun trauma as neighbors, friends, or family.
Vicarious Trauma Among Rural Montana Healthcare Providers
Bortko (2014) conducted a qualitative study involving Montana NPs and PAs practicing in rural
environments. Themes were found among the clinicians in the study; they were doing what they
loved, describing the management of rural trauma care as exciting and meaningful. They described
themselves as problem solvers who could take control of the chaos, stay calm, be competent, and
display confidence. They also described their gun trauma experiences as horrific, remembering
them as if the experiences were only yesterday. They practiced emotional containment (i.e., “it is
what it is”). Long hours, loss of sleep, and increased fatigue contributed to a sense of aloneness and
isolation. Anxiety and a sense of sorrow affected their personal lives and relationships. Inclement
weather, remoteness, limited resources, and lack of understanding by distant, urban providers were
also cited as hardships. Bureaucracy involving federal regulations, administration, and insurance
companies greatly contributed to their job dissatisfaction. Lack of appreciation for their efforts and
contributions was also described. Providers with overwhelming stress coped by quitting their positions, leaving voids in their communities and difficulty in finding replacement staff.
Methods of cultivating resilience involved faith; acceptance; wisdom attained with age and experience; time with family, peers, and pets; and being outdoors. They described their fears as healthy
and motivational for continual learning, training, and honing of skills. They shared their need for
counseling at times (Bortko, 2014).
CASE STUDY 261: RURAL EMERGENCY CARE:
A PERFECT STORM
Margaret was an NP in a rural Montana community, offering primary, acute, and emergent care. She
had just told another NP, as they chatted during intermission at the local theater performance, that
thankfully she was not on emergency call this night as the moon was full and it was Friday the 13th.
Margaret was awakened by her teenage daughter at 2 a.m. informing her a call had just come in
and she was needed in the emergency room (ER). A friend’s family member had been shot. Quickly
dressing on this balmy summer night, Margaret thought she was simply being called on to support
the family, as the physician assistant was the scheduled provider this weekend. She lived only minutes
from the eight-bed CAH, located in a ranching community of 900 in southwestern Montana.
She pulled up to the hospital entrance to find a small crowd of local people, friends, neighbors,
and patients—all familiar faces. They parted a path for her to move through the crowd and up the
Case Study
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CASE STUDY 261: RURAL EMERGENCY CARE:
(continued)
A PERFECT STORM
ambulance ramp to the hospital entrance. On her way, she noted a man, another patient of hers, sitting
on the ground, holding his head and sobbing deep, guttural cries about his son, “My Jim is dead.” Jim,
27, a father and husband, is lying in the back of a pickup truck haphazardly parked by the ER entrance.
Unaware of what she would find inside the hospital walls, Margaret laid a hand on the grieving father’s
shoulder in a meek attempt to connect, then mumbled, “I better get inside.”
Entering into bright lights and chaos, Margaret rushed to the first emergency room. Lying on the
single gurney was 21-year-old Truett with a bullet wound in his thigh. Truett told Margaret there are
others who were also shot. The shooter was deliberate in his targets: a group of local young adults who
had grown up together, as they socialized, laughing, playing pool, and catching up after the college
semester about new jobs, marriages, and births. Truett seemed in no imminent danger via Margaret’s
quick triage skills because he was awake and conversing. She quickly ran to the second ER room where
22-year-old Mike was writhing in pain on one stretcher and Matt was laying quietly on a stretcher next
to him. The old hospital operating room had been converted to an ER not long ago and was now filled
with community members, hospital staff, and volunteer emergency medical technicians (EMTs).
With no knowledge of the number of victims possibly out there, and counting as they entered
the CAH, Margaret escorted ambulatory victims to a hospital room with several beds. Georgia, critically
injured, was brought in by stretcher, but the gurneys in both emergency rooms were full so Margaret
directed the helping hands to place her on the X-ray table across from the ER.
Where was the physician assistant right now? He was out of sight for the moment, calling for
helicopters from the larger medical communities 3 hours away. Margaret later learned the state
emergency radios were abuzz with these frantic calls for assistance from her small town. “No, we
don’t know yet how many victims there are. . . . No, we don’t know who you are coming to pick up or
their exact injuries. . . . Please, just mobilize and get here. . . .Yes, there are critical patients.” The details
normally exchanged in standard communication with emergency flight transfers had not yet been
clear. The other 911 communities were listening in on their radios and scanners, wondering what was
going down in Ennis, Montana.
As Margaret grabbed a stethoscope to listen to quiet Matt’s lungs, she asked the staff if any
doctors were in house. “No” was the chorus response—just her and the PA. The hospital switchboard
operator showed up and realized it would be best if she manned the phones. The nearest ambulance
crew from Sheridan, 30 miles away, was en route to assist with the mass casualty. Margaret also learned
the shooter was not yet apprehended. She quickly called home and told her children she was in for an
all-nighter and that they must remain home for their own safety.
Matt’s left lung was silent, his blood pressure and oxygen saturation were dropping. While
determining his status, she directed the EMTs to assure oxygen was placed on the patients, asked the
nurses to start intravenous lines (IVs) of normal saline on the critical ones, and requested someone to
check on the two patients who were assisted to the hospital room. From her advanced trauma life support
training, Margaret made a quick assessment, taking only seconds to determine that Matt urgently needed
a chest tube to reinflate the quiet left lung. The PA wanted an X-ray to confirm. Margaret responded, “No
time for an X-ray, besides, Ginger is on the table in there.” The PA’s last chest tube insertion was more recent
than Margaret’s, so she handed him the scalpel as staff rushed to gather the supplies he needed.
Margaret turned and assessed Mike on the second stretcher, bullet entry to the abdomen. He
was pale but had two IVs, oxygen, and blankets. A volunteer EMT was assigned to monitor him. Where
are the helicopters? She prayed they were en route from the distant medical centers. Margaret then left
(continues)
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Chapter 26 The Effects of Gun Trauma on Rural Montana Healthcare Providers
CASE STUDY 261: RURAL EMERGENCY CARE:
(continued)
A PERFECT STORM
the ER and tended to Ginger. Margaret knew this young female patient of hers. Ginger’s mother was
also the hospital housekeeper. Would she be in here later mopping up her own daughter’s blood?
Ginger was laying on the hard, cold X-ray table. “Can we make her more comfortable?” Margaret asks
the nurse. Margaret assessed her status and bullet wounds, saw that O2 and an IV had been started.
She requested a Foley insertion, which spewed frank blood upon return rather than the normal yellow
urine. She later learned the bullet had entered Ginger’s pelvis and ricocheted within. Ginger’s spouse
was Mike, the father of her young child, in the other room. Margaret explained to Ginger that Mike was
also injured with a gunshot wound to the abdomen and was being cared for. Margaret would check on
him again. Meanwhile, she told the nurse, “Let’s get some blankets on Ginger,” aware she was in shock.
Where are the helicopters?
Margaret then quickly ran to the less injured young men in the hospital beds. The three were all
stable despite the bullet wounds, and each had an EMT assigned to them as the nurses were busy with
the critical patients. She learned there were two helicopters en route, coming from several medical
centers all over 200 miles away. These newer helicopters had no need to refuel for this distance, an
integral variable in rural trauma, as there was no jet fuel at the tiny county airport. Each helicopter
could take two patients with them, but only one could be severely injured. Additionally, one paramedic
ground transport was en route from 60 miles away.
Margaret then invited Matt’s parents to the stretcher side and explained the bullet wounds, chest
tubes bubbling from his flank, a heart monitor, oxygen, and IVs. She then promised, “We will get him
on the first helicopter out of here.” They stood quietly in the ER, strewn with medical supplies and trash,
and watched in disbelief at the chaotic scene unfolding before them. Margaret was aware that this
couple had lost another son in a local drowning accident several years ago. She could not bear the
thought that they may also lose this son. Matt was transferred via helicopter to an out-of-state medical
center in Idaho, and the parents followed by car. Later, when the shooter was sentenced, this family
gracefully faced the shooter in the courtroom, hoping he would find peace in God while imprisoned.
The next victim to leave Ennis was Mike, via ground transport to the closest Level III trauma center
in Bozeman. This is a 60-mile drive on a tortuous two-lane road through a river canyon, closed at times
during winter storms. But this night was warm and clear for June. The surgeon there, who had been
one of Margaret’s advance trauma life support instructors, prepared the operating room where Mike
was immediately rolled into upon arrival, and they patched his bullet-nicked aorta. Soon afterward,
Mike was then flown to Harborview, a Level I Trauma Center in Seattle, Washington, for the specialized
care of his traumatized pancreas and a complicated recovery altering his life forever.
The airlift ambulance crew arrived over the mountain pass and created a 60-foot landing zone on
the two-lane road in front of the hospital, lighting it with headlights and redirecting the early morning
traffic. Ginger was put on the second helicopter and taken to Billings, 200 miles away.
It was now daybreak. All patients were transferred. The deceased man in the back of a pickup
truck at the hospital entrance was taken to the local funeral home. The staff and EMTs now cleaned up,
throwing out trash and restocking. Time for decompressing—charts were completed and tears flowed.
Margaret hugged one of the volunteer EMTs who had lost her own child in a tragic horse accident last
year. The EMT picked up the mop and Margaret sensed the interconnections in a small community.
Margaret now allowed herself to feel the emotions. She realized she was shaken to the core in a
way never experienced before. It was a war zone for her little hospital. She needed to leave the hospital
and drive slowly down Main Street to see the scene of the shooting for herself. The sidewalks were
cordoned off with yellow crime tape. There were police cars scattered on Main Street and later an FBI
van arrived. She learned the shooter had fled and had not yet been apprehended.
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CASE STUDY 261: RURAL EMERGENCY CARE:
(continued)
A PERFECT STORM
The sun was rising, a picturesque and golden summer morning with the mountains shining in
the distance. Life on Main Street pretended to start as usual as possible, businesses were opening and
delivery trucks were unloading. Soon after, a rancher led a cattle drive across Main Street toward a
summer pasture. Margaret wondered if the animals would destroy any evidence.
Margaret stopped at the local gas station and bought a pack of filtered Camels. She had not
smoked in years. Exhausted, home now with her sleeping children and several of their friends, she
sat on the porch swing, smoking the Camels in rapid succession, watching the sun climb over the
mountains and spill into her peaceful valley. She could not sleep until she had word about the patients
and how they were doing in the distant medical centers. Despite fevers, surgeries, transports, and
critical status, all patients were still alive. Only then was Margaret able to crawl into bed.
The following days offered more information about the shooter: a 45-year-old male, a drifter,
who gave law enforcement a 200-mile chase through backroads and highways in rural Montana, also
shooting and injuring police before his arrest. He was identified as George Davis, a military-trained
killer who had served as a mercenary in Nicaragua. He had a prior criminal record, four restraining
orders, and was a proclaimed anti-Semitic White supremacist. Davis’s defense attorney offered the
defense of Paxil withdrawal in combination with alcohol intoxication. He was unrepentant according to
prosecutors. Davis was found guilty (Ennis Shootings, 2003.)
Margaret was present at his sentencing in the county courtroom, along with many of the victims,
their families, and the community. Davis was sentenced to 11 life terms, the largest prison sentence ever
given in the state of Montana, with no possibility of parole (Montana Department Corrections, 2017.)
The cohesive community of Ennis rallied with fund-raisers for the victims. “Love Wins” appeared
on T-shirts and bumper stickers throughout the ranching valley. Auction items were purchased and
then immediately donated back to the auctioneer for a second bidding. The funeral for the deceased
victim, a volunteer firefighter in Ennis, was held at the fire department with over 1,000 attendees. The
witnesses and victims shared their individual stories of survival and near-miss gunshots. They confided
how they distracted the shooter as he took aim at old high school friends—some crouched within and
beneath the parked vehicles on Main Street.
Ennis High School required a mandatory first aid course for all seniors prior to graduation.
Everyone involved in assisting during the rampage had taken this course. They had quickly evaluated
the situation, used clothing to control bleeding, and transported victims in their pickup trucks to the
hospital. This quick action was precious in the golden hour of trauma care. It is believed these citizens,
volunteer EMTs, nurses, PAs, and NPs contributed to the survival of the critically injured victims.
▸
Conclusion
Many variables contributed to the perfect storm experienced by the rural NP and PA in Ennis,
Montana, on that fateful full moon night. A dangerous mentally ill criminal had easy access to a
firearm and opened fire on an unsuspecting group of young adults. The healthcare providers practiced in a remote and isolated location with very limited resources, fending for themselves during
this mass casualty disaster. The NP was intimately involved with most of the victims and their families as their healthcare provider, neighbor, and friend, thus, adding to her engagement and subsequent emotional toll.
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While this is an extreme case, it is not uncommon in our nation today. Many clinicians in both
urban and rural areas experience VT. Dr. Jean Watson, nurse expert on caring, counsels that it is
the toughest experiences in our lives and in the caring for others in crisis that bring us to the deepest of life’s meaning. It is in this practice that we, too, are healed (2003).
References
American Academy of Pediatrics. (2013). Gun violence policy recommendations. Retrieved from https://www.aap.org/en-us
/advocacy-and-policy/federal-advocacy/documents/aapgunviolencepreventionpolicyrecommendations_jan2013.pdf
American Nurses Association. (2016). Stop the madness: End the violence. Enact meaningful gun control legislation.
Retrieved from http://nursingworld.org/ANA-MeaningfulGunLegislationDeclaration
American Public Health Association. (2016). Letter to the Appropriations Committee. Retrieved from https://www.apha
.org/~/media/files/pdf/advocacy/letters/2016/160406_gunresearch.asx
Barnason, S., & Morris, K. (2011). Health care in rural hospitals: A role for nurse practitioners. Advanced Emergency Nursing
Journal, 33(2), 145–154.
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UNIT IV
Teaching and
Learning
© RichLegg/ E+/ Getty Images
Teaching should be full of ideas instead of stuffed with facts.
—Anonymous
CHAPTER 27 Teaching Nurses About Vulnerable
Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 305
CHAPTER 28 Caring for Vulnerable Populations:
Outcomes with the DNP-Prepared Nurse . . . . 315
CHAPTER 29 Vulnerability and Resilience: Teaching
Students in Low-Resource and Culturally
Unfamiliar Settings . . . . . . . . . . . . . . . . . . . . . . 325
© Bartosz Hadyniak/ E+/ Getty Images
CHAPTER 30 Health Care in Mexico . . . . . . . . . . . . . . . . . . . . 333
CHAPTER 31 Honors Capstone: Preparing Grant
Content for The Hope Box . . . . . . . . . . . . . . . . . 341
303
© MachineHeadz/ iStock/ Getty Images
CHAPTER 27
Teaching Nurses About
Vulnerable Populations
Mary de Chesnay
OBJECTIVES
At the end of this chapter, you will be able to:
1. Discuss ways to teach students about their own ethnocentrism.
2. Discuss specific things about other cultures that students need to learn.
3. For each model described, identify how you can use it in other settings.
▸
Introduction
The American Academy of Nursing (AAN) and the American Association of Colleges of Nursing (AACN) have devoted much attention to teaching students to be culturally competent. The
AAN has an expert panel assigned to the topic (AAN, 2011; Giger et al., 2007), and the AACN has
mandated cultural competence as an outcome of baccalaureate education. The The Essentials of
Baccalaureate Education for Professional Nursing Practice document lists five competencies that baccalaureate students are expected to demonstrate by graduation (AACN, 2008). A toolkit for graduate students is available on the website, along with competencies for graduate students (AACN,
2010). Much attention in the literature is devoted to teaching people how to be culturally competent. There is a cottage industry of cultural trainers and consultants who teach courses on cultural
sensitivity, competence, or awareness.
It would seem that cultural competence is a good thing to know and, therefore, must be taught.
As with any bandwagon, however, it is essential to critically examine the nature of the concept and
determine what it means to teach students to be culturally competent. Dreher and MacNaughton
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
305
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Chapter 27 Teaching Nurses About Vulnerable Populations
(2002) caution that we should pay attention to the fact that individuals and their cultures do not
represent a settled, static relationship—culture evolves over time, making it difficult for clinicians
to keep up. These authors assert that, in public health, which focuses on populations instead of individuals, it is useful to understand as many cultural factors as possible about a group, although
such understanding might be difficult to achieve in acute care settings. They caution against the
danger of attributing poor communication to “cultural differences” instead of to a nurse’s poor
interpersonal skills. Their contention is that cultural competence is simply nursing competence.
There still seems to be an important place in nursing education for teaching students to be
competent communicators with people who are different from themselves. This chapter provides
some ideas on this subject for faculty and students.
There are many ways to teach nursing students how to work with vulnerable people, and there
are numerous activities students can undertake to gain practice in providing culturally competent
care. This chapter presents some ideas for faculty about how to use these strategies and inspires
them to devise similar learning activities for their own students. For students who read this chapter, I hope that they find some of the experiences presented here inspirational with regard to their
own fieldwork.
For any activity designed to prepare nurses to provide culturally competent care, it is critical
to emphasize two key points: know yourself and show respect for others. First, the best way that
nurses can prepare for working with vulnerable people is to know themselves. The more a person
knows and acknowledges his or her own biases, the easier it is for the nurse to put these prejudices
aside and concentrate on the patient as a person instead of a stereotype. Ethnocentric bias is a term
derived from anthropology that refers to the notion that your cultural beliefs, practices, folkways,
values, and norms are the right ones. Ethnocentric biases develop from our experience of living
within our own cultures: growing up in families, attending educational institutions with certain
emphases, and interacting with people we like or do not like. Ethnocentrism is neither good nor
bad—it just is. To acknowledge that we all have biases simply indicates that we are human. People
tend to get in trouble, however, when they act toward others as if their own way is the only right
way or when they confuse bias with truth.
How do we learn to deal with ethnocentric bias? It is essential to recognize a particular feeling
or attitude as bias and then to critically examine all of our values and beliefs, particularly in terms
of how we see others who are different from ourselves. This principle of self-examination relates to
everyone, not just to members of majority groups. It might be helpful to apply the general system
theory concept of multifinality, which holds that there are many ways to reach the same end. Appreciating that other ways of achieving the goal might be equally effective and valid is a key component of self-awareness.
The second way that nurses can prepare for working with vulnerable people is to learn to show
respect. Novices tend to expend large amounts of time and energy trying to learn cultural material
quickly so that they can interact “appropriately” in terms of superficial gestures, such as making
eye contact or not, shaking hands or not, or touching arms. Yet, despite the best of intentions, these
actions can sometimes be interpreted as mocking the group. Being yourself, yet doing your best in
terms of showing the most respect according to your own cultural standards, is more likely to be
respectful than adopting gestures or expressions that are obviously not your own. In this regard,
cultural competence is a misleading concept because it implies that you are competent to practice
another group’s cultural behaviors. A more useful view of cultural competence is that it entails being comfortable while interacting with diverse people who behave in ways and hold values that are
different from yours without judging the other group by your standards.
What Should Students Learn?
307
Another key point in providing culturally competent care is to reframe compliance or adherence in light of the patient’s or group’s cultural norms, values, and folkways. For example, students
might not understand food taboos and offer pork to a Muslim or Jewish patient, then wrongly interpret the patient’s rejection of pork as a loss of appetite. Many Arabs and Jews do not observe the
dietary laws, but many do, so it is important to ask about this issue.
The patient and family are always the best teachers of their culture. The salient point for the
culturally competent provider is to ask and not to assume. Think of your patients and their families as your best teachers about their culture. However, in the end, being authentic yet respectful
is the main lesson to learn.
▸
Why Teach Nursing Students About Vulnerable
Populations?
Global demographics are changing as populations evolve into ever more complex societies. Demographics of individual countries are also changing rapidly as people move within their countries or from one country to another to find food, jobs, or simply better lives for their families. As
the costs of living and health care spiral higher, the most vulnerable members of the population
become even more entrenched in the daily ordeal of living. The nursing profession cannot afford
for its practitioners to be isolationistic in the way they treat patients and families, nor can it afford
to ignore communities. Community-based care and a focus on populations are aspects of nursing
that students need to learn to provide cost-effective, culturally competent care.
The kinds of experiences students have in their basic educational programs can improve their
confidence. This chapter presents three models from different universities. Although two of these
universities happen to be private, the strategies and activities are universal and can be adapted by
anyone interested in helping students develop or improve cross-cultural interpersonal relations.
Many schools have implemented similar programs on behalf of the vulnerable populations of their
or international communities. Websites for the schools are a good source of information.
▸
What Should Students Learn?
Nurses need experiences that teach them to be comfortable with people different from themselves,
which requires interaction with many kinds of people. It is not sufficient to simply review the literature and write papers on vulnerable populations. Although writing papers is useful, it can be
an empty intellectual exercise if not combined with developing competence at talking with people.
Fieldwork is an excellent way to develop interaction skills; immersion programs such as study-abroad
programs in which students live with local families are even better.
Students need to develop an understanding of culture and become aware of their ethnocentric biases. In doing so, they need a safe context for their own experimentation in which they will
not be criticized by their faculty for attitudes they hold but rather coached to develop new ideas
or views about the vulnerable. For example, it is not useful to berate students who believe that all
homeless people should take menial jobs so they can get off the street. Instead, they should be
guided to understand the complexities of homelessness and the reasons why even menial jobs are
not an option for many people.
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Chapter 27 Teaching Nurses About Vulnerable Populations
Even though the statistical information on vulnerable populations often becomes obsolete before it is printed because the health disparities tend to increase with population increases, students
still need to know who the vulnerable are and recognize the health disparities associated with the
vulnerable populations in their communities. Students should be encouraged to review the literature critically for applicability to vulnerable populations and to formulate practices that better
serve the vulnerable.
Finally, students should learn how to reverse vulnerability. Nursing means not only curing and
preventing illness but also strengthening the patient’s resources so that the patient becomes less
vulnerable. Once trendy, the term empowerment has fallen out of favor because it has a patriarchal
connotation, yet the notion that people can be helped to attain autonomy is still useful in teaching students to care for the vulnerable. Perhaps a more appropriate intervention is to help the patient develop or increase resilience. Everyone has strengths, and focusing on strength rather than
weakness is a good therapeutic technique. Several chapters in this text, for instance, emphasize the
nature of resilience.
▸
Models of Experiential Learning
Duquesne Model
Duquesne University is a small liberal arts institution founded in 1878 and operated by the Spiritans,
an order of priests with strong service ties to developing countries in Africa and South America.
Through its school of nursing, Duquesne confers undergraduate and graduate degrees, including
a PhD, and it offers a variety of certificate and continuing education programs. During the author’s
tenure as dean of the school from 1994 to 2002, the faculty created a variety of programs and experiences for students and faculty to operationalize the service mission of the university. Two major
outreach programs (local and international) are particularly relevant to the education of nursing
students in caring for people from vulnerable populations, and these programs involve students at
all levels: baccalaureate, master’s, and doctoral.
Nurse-Managed Wellness Centers
The first outreach program was initially funded by the school of nursing and later by a grant from
the U.S. Department of Housing and Urban Development (HUD). The faculty member who coordinated the gerontological clinical nurse specialist track in the master of science in nursing
(MSN) program created a model for outreach into the community by starting a wellness clinic in a
high-rise apartment building designated for senior citizens (Taylor, Resick, D’Antonio, & Carroll,
1997). Students and faculty conducted many health-screening and health-promotion activities
Residents, staff, faculty, and students evaluated the model as successful, with the clinic later replicated in a federally funded project to expand services to African Americans in the poor neighborhoods near the university.
With the success of the prototype center, two additional centers were opened in the African
American communities of the Hill District and East Liberty (Resick, Taylor, & Leonardo, 1999).
Later, the Visiting Nurse Association in Butler County, Pennsylvania, adopted the model for a rural community north of the city. To prepare for the expansion of the clinic, the faculty used ethnographic methods to gain access to the community, to establish rapport with civic leaders and
community residents, and to identify unmet needs that the school of nursing could fulfill (Resick,
Models of Experiential Learning
309
Taylor, Carroll, D’Antonio, & de Chesnay, 1997). The community members initially had reservations about the proposed clinic because they perceived previous experiences, when outsiders had
come into the community for various research projects, as disrespectful to them. However, by using
the principles of ethnographic research and the methods of participant observation and interviewing, the faculty found ways to involve the community in planning so that when the second clinic
opened, the community members reported that they felt a sense of ownership.
As of this writing, the original clinic and the Hill District clinic are thriving and provide a continuous educational experience for students and a practice setting for the nurse practitioner faculty.
Faculty and students conduct health assessments, medication evaluations, teaching presentations,
exercise classes in the form of dance therapy, and other health-promotion activities. One of the
projects at the clinics involved creating a chart audit system for measuring outcomes. This experience provided graduate students with the opportunity to apply theory to the practice of nursing in
a functioning practice setting and allowed them to test the validity and reliability of the audit tool
in a real setting in a way that would be used by the staff (Resick, 1999).
When necessary, staff refer residents to their primary care providers and, in some cases, directly to the emergency room. Students who rotate through the clinics obtain a sophisticated understanding of the healthcare issues affecting the elderly in the two independent-living high rises,
one of which has a predominantly White population and the other a predominantly African American population. Through the clinics, students learn firsthand about the issues that affect the elderly as a vulnerable population.
Other activities in the local communities were initiated at the request of the community leaders who had identified problems. One highly successful program taught cardiopulmonary resuscitation (CPR) to residents of all ages. A research project was conducted by faculty to examine
community knowledge about CPR, and the results were helpful in developing the CPR programs
(Winter, 2001). Certified faculty conducted classes in the community centers, and people of all
ages completed the course.
Center for International Nursing
The Center for International Nursing was created in 1992 (Carty & White, 1993; White & Smith,
1997) to provide an administrative structure within which students and faculty could conduct
educational programs, service projects, and research abroad. Initially, the Center’s focus was Nicaragua, but later the Center expanded to South America, Africa, and Europe to complete specific
initiatives. From 1994 to 2002, more than 130 students at all levels completed international projects, and each year 6 to 10 undergraduate students complete part of their community health nursing clinical requirement in a barrio in Managua in conjunction with Duquesne faculty and faculty
in Duquesne’s sister school, Universidad Politecnica de Nicaragua (UPOLI; L. Cunningham &
S. Colvin, personal communication, August 2000). The students conducted community assessments, performed health assessments, intervened in referrals to the community health clinics, and
conducted health fairs to teach the community residents a variety of health-promotion techniques.
In another project, one of the critical care faculty taught part of the trauma content to students in
a hospital in Managua (C. Ross, personal communication, September 1999).
Owing largely to the publicity about the Center’s activities, the Pittsburgh Rotary Club approached the nursing school about starting an international health project. They built a clinic in
partnership with the Rotary Clubs of Managua and Jinotega in a northern community of Nicaragua
near the city of Jinotega. When the community residents were asked what they wanted to name
their clinic, they indicated that they wanted it named for a late member of the Pittsburgh Pirates
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Chapter 27 Teaching Nurses About Vulnerable Populations
baseball team—La Clinica de Roberto Clemente. Clemente died in a plane crash while trying to deliver medical supplies after the Managua earthquake of 1972 and is still revered in Nicaragua. Nurse
practitioner faculty use this clinic as a clinical site for training graduate students, and the community was the site of an ethnographic study on men’s health conducted as dissertation research by a
doctoral student, as described in Chapter 34 of the first edition of this book (Ross, 2000).
A second international study was conducted as action research by a doctoral student who
worked in Peru on the clean water project run by the Sisters of Mercy (Zolkoski, 2000). Other doctoral students have conducted independent studies in Nicaragua and served as teaching faculty for
some of the programs offered to the local nurses and physicians.
Faculty made a commitment to the sister school (UPOLI), and many other projects were conducted with the poor of Nicaragua. The emphasis on the “train the trainer” approach meant that the
faculty tried to work with the local nurses as much as possible; many projects were accomplished
with the support of the sister school faculty. The study by Colvin, de Chesnay, Mercado, and Benavides (2005) described in Chapter 17 of the first edition of the book, “Child Health in a Barrio
of Managua,” was an outcome of the work conducted under the auspices of the hermanamiento
(sister school relationship). Many other projects and programs have been conducted as well—too
many to mention all of them here.
Online Doctoral Program
Concurrent with the increasing international visibility of the Duquesne University School of Nursing, the faculty became aware of the desire of nurses in developing countries to improve nursing
education for their people. Dr. John Murray, the university president, challenged the deans to experiment with distance-learning strategies, and the faculty chose to meet his challenge by creating
opportunities for nurses in developing countries to earn Duquesne’s PhD in nursing through synchronous Web-based courses, coupled with residency on campus during the summers. The first
course was taught by Dr. Jeri Milstead in the summer of 1997 (Milstead, 1998). Although some
international nurses applied to the program, Duquesne’s faculty were surprised at the popularity
of the program among nurses who lived within driving distance of the university. Many lived in
medically underserved areas where they needed to continue working because there was no one to
replace them or because they still had children at home, but they were highly motivated, and the
program became extremely competitive.
Seattle University Model
The Seattle University College of Nursing has a long tradition of furthering the mission of the university to promote social justice by serving the poor. In response to changes in health care during
the 1980s, faculty revised the master’s degree program to teach advanced practice nurses to work
with vulnerable populations (Vezeau, Peterson, Nakao, & Ersek, 1998). Originally developed as a
clinical specialist program, the faculty recognized the need for a corresponding program for nurse
practitioners and added a family nurse practitioner track. More recently, the Seattle nursing school
has developed an innovative second-degree immersion track for people with college degrees in
other disciplines who wish to be nurses.
Many experiences in other courses (for example, the clinical courses and the thesis/scholarly
project) enable the students to develop comfort and skill in working with diverse patients, families, and communities. For their thesis or other scholarly project, the students are expected to develop projects significant to their own future roles as advanced practice nurses and to vulnerable
populations.
Key Components of Educational Experience
311
In the BSN program, students work in the poor neighborhoods, called garden communities, located near the university. Garden communities are scattered around the city, and students spend a good bit of clinical time there. Faculty are assigned to each community and provide
clinical supervision and support. The undergraduate course on vulnerable populations is a twocredit required course in which the students conduct fieldwork by interviewing persons different from themselves so as to develop comfort with and competence at interacting with culturally
diverse people and groups. Students discuss their fieldwork in a variety of settings in the United
States and Belize.
Kennesaw State University Model
Located just north of Atlanta, Kennesaw State University emphasizes global learning in a way that
has moved the university onto the world stage in several disciplines, and its school of nursing is a
leader in this effort. For many years, the WellStar School of Nursing has sent students to Oaxaca,
Mexico, to live with families, study Spanish, and learn in the local hospitals and community agencies. Students report that their experiences there are life-changing. Even though many may not
travel abroad again, they express an appreciation for the Mexican culture of clients they serve in
this country. Consistent with the community-engagement philosophy of the faculty and leadership,
students have traveled extensively in the Middle East, Caribbean, Korea, and low-income communities within the United States.
For a course on vulnerable populations, I have assigned undergraduate students to conduct
fieldwork with populations different from their own. The groups might be of different races or ethnicity or simply be members of a population that is medically underserved or disadvantaged such
as homeless people. Students interviewed a variety of service providers and group members and
presented what they learned to the class. Similarly, for a course in human trafficking, students in
nursing and the honors program interviewed service providers for trafficking survivors.
▸
Key Components of Educational Experience
A plan for teaching nursing students how to care for vulnerable populations might include the following components:
■
■
■
■
■
Identify the vulnerable populations within the community. If international nursing is an interest of the school, then faculty might capitalize on their own international research or service
experiences. Sister school relationships such as the Duquesne hermanamiento could provide
wonderful opportunities for faculty and student exchanges, service learning projects, or collaborative research with nursing faculty in other countries.
Develop a set of guidelines for students to follow for their fieldwork with the expected outcomes
clearly stated. Outcomes should include an expectation for improved self-awareness.
Designate key faculty to coordinate or guide the process. Not every faculty member will want
to be involved, but it is essential to have at least one faculty champion for each project.
Establish the need for specific projects in concert with stakeholders who are key members of
the population.
Decide whether service-learning projects will be part of the curriculum and conducted within
specific courses or whether they will be freestanding efforts that are initiated as people express
interest in them. One way to focus on vulnerable populations without undertaking major curriculum changes is to allow students to use independent study courses for fieldwork.
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Chapter 27 Teaching Nurses About Vulnerable Populations
■
Design and implement a small-scale project that can be funded through existing resources.
Later, after individual faculty members have established a track record, more sophisticated
projects can be funded through grants and contracts.
Evaluate the projects not only in terms of student satisfaction and learning, but also in terms
of benefits to the population.
Consider evaluation data carefully before designing subsequent projects.
▸
Summary
■
■
The models presented here have several characteristics in common that contributed to their effectiveness in meeting the objectives of the courses and programs. Successful experiences for students
include opportunities for developing self-awareness, fieldwork that enables them to develop communication skills and interact with people different from themselves, and a review of available literature
on the population of interest. Although these experiences are challenging, the students generally
rate them as positive. In many cases in which students have traveled to other areas to become immersed in another culture, they indicate that their experiences were life-changing. The success of
these service learning programs demonstrates that providing such opportunities at undergraduate
and graduate levels is a crucial aspect of nursing education with regard to vulnerable populations.
References
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Practice. Retrieved from http://www.aacnnursing.org/Education-Resources/AACN-Essentials
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www.aacn.nche.edu/Education/cultural.htm
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CHAPTER 28
Caring for Vulnerable
Populations: Outcomes with
the DNP-Prepared Nurse
Barbara A. Anderson and Gwendolyn Short
OBJECTIVES
At the end of this chapter, you will be able to:
1. Describe the theoretical framework of social justice as the basis for caring for the health of
vulnerable populations.
2. Explain how this framework applies to the care provided to vulnerable populations by DNPprepared nurses.
3. Examine current outcomes demonstrating how DNP-prepared nurses incorporate social justice
in health care.
▸
Caring for the Health of Vulnerable Populations
Social Justice: A Framework of Caring for Health Vulnerability
Immanuel Kant (1724–1804), the German philosopher during the Age of Enlightenment, revolutionized Western thinking with his moral theory—the duty to do good (“Great Thinkers,” n.d.).
John Rawls, author of the classic book A Theory of Justice (1971), was influenced by Kant and
developed a theory of justice around the duty to do good. From that point, he developed the premise justice as fairness, which expanded into the concept of distributive justice—the just distribution
of goods in a society.
Chapter Opener Image Credits: Left to Right: © RichLegg/ E+/ Getty Images; © Dragana991/ iStock/ Getty Images; © Gustavofrazao/ iStock/ Getty Images
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Chapter 28 Caring for Vulnerable Populations: Outcomes with the DNP-Prepared Nurse
Rawls described a well-ordered society, which he defined as one that promotes the good of its
members and is regulated by a concept of justice (Rawls, 1971). The American system of governance is based on the concept of justice, as embedded in the Pledge of Allegiance—with liberty and
justice for all. Equity and social justice in the provision of health care, health justice, is a judicial
and legislative framework that scaffolds the safety net, protecting the health of the public including those most vulnerable (Benfer, 2015). Health justice fails when a nation does not address the
social determinants that create inequity and injustice (Benfer, 2015).
Health Vulnerability in America
The United States has one of the least just and most inequitable of healthcare systems in the developed
world. It is the only developed nation in the world that does not insure health care for all its people.
Americans are sicker and die sooner than citizens in 16 other high-resource nations. The United
States has worse outcomes with birth, injuries, homicide, adolescent pregnancy, sexually transmitted infections, HIV/AIDS, drug and alcohol mortality, obesity, diabetes, heart disease, chronic
lung disease, and disability among older persons. These outcomes hold across age, ethnicity, and
socioeconomic level. They are not only problems of the poor. While the U.S. healthcare system is
expensive, health outcomes are suboptimal (National Research Council [NRC] and the Institute
of Medicine[IOM], 2013).
With enormous wealth, yet a sick and frequently impoverished people, a fragmented healthcare system, and poor health outcomes, the U.S. population presents an unparalleled health paradox. High rates of adverse health outcomes and poor health among many citizens is grounded in
pervasive issues of social injustice affecting access and adequacy of care for many. The key areas of
vulnerability identified previously are the national targets in the Healthy People 2020 goals (Office
of Disease Prevention and Health Promotion, n.d.).
▸
Leadership of the DNP in Health Justice
As of 2015, there were 11.8 million healthcare workers employed in the United States, of which
2.7 million (23 percent) were registered nurses (U.S. Bureau of Labor Statistics, 2015). In 2017, the
Henry J. Kaiser Family Foundation reported a total of 3,316,111 “professionally active nurses” in
the United States (Henry J. Kaiser Family Foundation, 2017). The nursing workforce in the United
States is the largest subset of healthcare providers, central to the provision of care on the individual
level as well as in population-based health. Building capacity for an adequate nursing workforce is
essential for the nation’s health, health justice, and the care of vulnerable populations, such as the
elderly; the uninsured; members of rural, underserved communities; and young families (Cramer,
Duncan, Megel, & Pitkin, 2009; Ganley & Sheets, 2009).
In 2010, in response to this need, the IOM released The Future of Nursing: Leading Change,
Advancing Health. This landmark document called for the nursing profession to practice to the full
extent of knowledge and skills, consistent with academic preparation and without impediments
from regulations or healthcare systems. The failure to fully utilize the nursing workforce would
exacerbate the critical shortage of primary care providers and adversely affect the health and vulnerability of the nation (IOM, 2010; Morgan & Somera, 2014). To improve outcomes toward health
justice, The Future of Nursing Campaign for Action has implemented the 2010 IOM recommendations through a joint initiative with the Robert Wood Johnson Foundation (RWJF) and the American Association of Retired Persons (AARP; Hassmiller & Reinhard, 2015).
Leadership of the DNP in Health Justice
317
Preparing Doctoral-Level Nurses for Leadership
A key objective of The Future of Nursing Campaign for Action is preparation for leadership through
doubling the number of nurses with doctoral degrees by 2020 (IOM, 2011). As of 2014, nursing education programs, both DNP and PhD programs, across the nation were meeting this goal
with the most substantial growth occurring in the DNP programs (Redman, Pressler, Furspan, &
Potempa, 2015). By June 2017, there were 303 DNP programs representing 50 states and the District
of Columbia. Plans are in place for an additional 124 programs (American Association of Colleges
of Nursing [AACN], 2017). In 2016, 25,289 DNP students were enrolled, an increase of 3,294 students (more than 13 percent) from 2015. In 2016, 4,855 students graduated from DNP programs,
an increase of 755 graduates (more than 15 percent) from 2015 (AACN, 2017). In the past decade,
the number of DNP-prepared graduates far exceeds the number of PhD graduates, although both
programs nationwide are growing (Redman et al., 2015).
Prior to the implementation of the DNP degree in 2001, the number of PhD nurses was low,
the focus was on primary research, and most graduates entered academia and research. The DNP
degree, as a radical departure from this one-track approach, was designed to translate research, rather
than to produce primary research. It aimed to return the graduate to the practice setting in a leadership position (AACN, 2017). Curricular focus was on improving individual and community-based
outcomes in health care, especially among vulnerable populations. As such, it embodied a strong
ethos of social justice.
Building Knowledge on the DNP Innovation
Nurses and other healthcare leaders who have concepts of equity and social justice embedded in
their educational experience have powerful leadership tools to effect change for and with vulnerable populations (Getzlaf & Osborne, 2010). An early, trendsetting example of deliberative academic
planning toward this end was the work of Margaret Bull and Judith Miller at Marquette University’s PhD program in nursing (2008). This PhD curriculum offers courses on methods used to
study health disparity, community-based participatory research, and the dissertation focused on a
selected vulnerable population.
With support from the 2010 IOM policy and solid academic preparation grounded in identified
competencies (see AACN, 2006), DNP curricular development has addressed vulnerability within
a framework of social justice. An example is the “citizen nurse” curriculum at Augsburg College in
Minneapolis, Minnesota. This yearlong pilot curriculum developed a practice model of catalytic
change skills, not exclusive to other content in the DNP program but rather embedded as a thread
in multiple learning activities and courses at the BSN, master’s, and DNP level. The curriculum was
designed and implemented by four nursing faculty (three of whom are DNP prepared) in collaboration with community partners (Clark, Miller, Leuning, & Baumgartner, 2017). The goal was to
build competence in this skill set so that nurses, including DNP-prepared nurses, could offer vulnerable persons and communities a partnership toward health.
Over the last decade, multiple books, publications, and papers have been published and presented on the DNP innovation. Much of the work to date, even most recently, has tightly focused
on role clarification and program establishment (Brown & Kaplan, 2016) as well as curriculum
development and anticipated impact on patient outcomes and health justice (Brown & Kaplan,
2016; Falk, Garrison, Brown, Pintz, & Bocchino, 2015; Rundio, 2016; Sherrod & Goda, 2016). There
has been minimal data on the impact that DNP-prepared nurses have had on patient care or system outcomes (Nichols, O’Connor, & Dunn, 2014; Pritham & White, 2016; Redman et al., 2015).
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Chapter 28 Caring for Vulnerable Populations: Outcomes with the DNP-Prepared Nurse
In all fairness, the efforts to date have attempted to develop a viable academic offering. The
bulk of graduates are just now entering or reentering the workforce after completion of the DNP.
These graduates are the pioneers, forging a new role and place in the healthcare system. They bring
an understanding of the issues facing vulnerable populations, the ability to apply evidence-based
knowledge, and the need for health justice. It will take time for them to demonstrate the value and
impact of their education, especially as it affects health justice.
Assessing Workplace Challenges Facing the DNP-Prepared Nurse
As graduates enter the clinical and academic settings with the DNP degree, they are facing some
challenges. There is some, although limited, literature on the barriers that have been encountered
among DNP graduates. They enter the workplace, “thinking differently about practice” (Brown
& Kaplan, 2016, p. 35). Healthcare administrators, including chief nursing officers, do not always
understand the leadership capacity and potential to affect individual and system outcomes that the
DNP-prepared nurse can offer (Nichols et al., 2014). At times, DNP graduates face stereotypes that
discriminate against nursing in assuming leadership and decision-making roles (Falk et al., 2015;
Waldrop, 2017) as well as challenges to billing for services (Waldrop, 2017).
Evaluating Outcomes of DNP Practice Toward Health Justice
A critical question in this unprecedented effort to increase the number of doctoral-prepared nurses,
especially DNP nurses, is: Will it make a difference in healthcare outcomes and in health justice? It
is essential to have solid metrics on DNP clinical outcomes (Berkowitz, 2015).
There is minimal data on the impact that DNP-prepared nurses have had on patient care or system outcomes (Nichols et al., 2014; Pritham & White, 2016; Redman et al., 2015). There is also limited
data on the types of positions or practice settings that DNP graduates assume (Redman et al., 2015).
The database, however, is beginning to grow. Some ways to measure outcomes include:
■
■
■
Graduate exit surveys from universities
Data from clinical, leadership, and academic settings
Publications by DNP graduates
Graduate Exit Surveys from Universities
Most programs conduct exit and follow-up evaluations of alumni. The findings of these surveys
are often used for university accreditation purposes, strategic planning, public relations, and information requirements for accreditors including review by the Commission on Collegiate Nursing
Education (AACN, 2017) and the Accreditation Commission for Education in Nursing (ACEN; 2017).
Much of this data is privileged and cannot be shared in a larger forum. However, the information does inform universities about the satisfaction of graduates, job placement sites, and number
of alumni hired into positions using skills germane to their degree.
Data from Clinical, Leadership, and Academic Settings
There have been no large-scale national level evaluation studies of outcomes among DNP graduates (Pritham & White, 2016). Stoeckel and Kruschke (2013) in a small qualitative, key informant study of practicing DNP-prepared nurses reported that 50 percent of the respondents were in
academic teaching roles and many were instrumental in the development of DNP programs in their
Leadership of the DNP in Health Justice
319
institution. The second most frequent employment site for University of Pennsylvania DNP graduates is in academia (Dunbar-Jacob, Nativio, & Khalil, 2013). With the critical shortage of nursing
faculty across the nation (AACN, 2010; Nardi & Gyurko, 2013) and with DNP graduates often possessing current clinical skills, DNP graduates are in high demand as faculty (Redman et al., 2015;
Wyte-Lake, Tran, Bowman, Needleman, & Dobalian, 2013). There have been the usual academic
battles over the issues of rank and tenure, but they are gradually resolving.
Publications by DNP Graduates
Much of the publication on the DNP innovation has been about DNP program development, about
the profile of the DNP graduate, and about the satisfaction of DNP graduates with their education.
The growing trend in publication, however, is not about DNP graduates but from DNP graduates—
their stories, their impact, and their contributions to health care. One deliberative effort in the fifth
edition of this text has been to recruit DNP-prepared authors actively engaged in fostering social
justice and improving the nation’s health.
In 2015, Redman et al. reported 690 publications by DNP authors or coauthors to date (Redman
et al., 2015). By the time this book is released, this number will be much larger. Publications are
clustered around topics of clinical practice, health system changes, and nursing education. The most
common topic is clinical practice (Redman et al., 2015), exactly the purpose of the DNP degree.
TABLE 281 presents some examples of DNP publications demonstrating impact on practice.
TABLE 281 Exemplar Publications Demonstrating the Impact of DNP-Prepared
Nurses on Practice
Publication
Intervention
Topic
Target
Population
and Site
Madler &
Helland,
2017
Academic/
service
partnership
Primary
care
provider
shortage
Rural and
underserved,
North
Dakota
Collaboration to
build FNP pipeline
✓
Rutledge,
Haney,
Bordelon,
Renaud, &
Fowler, 2014
Telehealth
Rural
health
outreach
Rural and
indigent,
Virginia
DNP curriculum
teaching telehealth
skills with telehealth
programs developed
by DNP graduates
in stroke education,
dementia caregiver
education, ostomy
care, medication
management of
mentally ill and the
elderly, neonatal
transport
✓
Outcome
DNP
Author(s)
(continues)
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Chapter 28 Caring for Vulnerable Populations: Outcomes with the DNP-Prepared Nurse
TABLE 281 Exemplar Publications Demonstrating the Impact of DNP-Prepared
Nurses on Practice
▸
Target
Population
and Site
Outcome
(continued)
DNP
Author(s)
Publication
Intervention
Topic
Flarity,
Gentry, &
Mesnikoff,
2013
Workplace
stress
Compassion
fatigue in
a highacuity
setting
ER nurses,
Colorado
Increased resiliency
in managing
compassion fatigue
✓
Short, 2015
Interdisciplinary
collaboration
Group
diabetic
education
Urban
diabetics,
Kentucky
Improved clinical
outcomes,
change in
reimbursement,
adoption of chronic
care model in
interdisciplinary
education
✓
Whitworth,
Anderson,
Buffington, &
Braun, 2014
System
change in a
global setting
Low-tech
life-saving
skills for
thermoregulation
with
newborns
Rural
midwives,
Uganda,
Africa
Improved
midwifery
management of
hypothermia
✓
Case Studies: Promoting Resiliency
and Health Justice
This concluding section presents two case studies exemplifying the contributions of DNP-prepared
nurses in partnering with both individual and population-based programs in building resiliency
and equity for vulnerable populations. The first case study focuses on the vulnerability of young
persons with cancer and the impact on their life course, including fertility. Both case studies
represent DNP projects by students attending the DNP program at St. Catherine University in St.
Paul, Minnesota. St. Catherine University is a Catholic University that has a strong commitment
to social justice and care of the vulnerable, with these concepts threaded throughout its curriculum university-wide, including both its liberal arts and professional programs.
Case Studies: Promoting Resiliency and Health Justice
321
CASE STUDY 281: PRESERVING FERTILITY IN
YOUNG CANCER SURVIVORS
In her 26 years of nursing practice as an oncology nurse, Michele has been a strong advocate for her
patients. Beginning as a nurse navigator, Michele quickly realized that taking care of patients, and doing
this well, required shared decision making between the patient and the healthcare team. A large part
of Michele’s career was working with patients who survived cancer, helping them navigate the process,
and getting them through the states she identified as the beginning, middle, and end. As she witnessed
patients go through these stages of acute survivorship, Michele recognized that, in each of these stages,
the patient had physical, social, emotional, and spiritual needs that needed to be addressed.
Her passion for patient advocacy and empowerment set the stage for Michele’s choice of a DNP
project. She wanted to focus on transplants and fertility. Patients who had survived bone marrow
transplants often told her they regretted their loss of fertility. In the life and death process of cancer
diagnosis and treatment, the thought of not being able to have a child was not a top consideration. If
the issue was addressed prior to treatment, the patient often did not remember the conversation. In
Michele’s experience, addressing fertility options was inconsistent and frequently overlooked. Surviving
patients often noted that loss of fertility is yet another loss.
The literature supports Michele’s experiential knowledge that healthcare providers do not do well
in talking with patients about fertility prior to bone marrow transplant. In response to this gap in care,
Michele decided that her DNP project would be to develop an interactive, Web-based educational
module for patients on the issues of fertility options related to bone marrow transplant. She hoped
that this information would help in decision making during their cancer treatment, be readily available,
and empower them.
Michele’s project has garnered a lot of interest from organizations that work with this patient
population. She has worked with a multidisciplinary stakeholder group representing medicine,
research, education, advocacy, economics, and law in spotlighting this issue. This educational approach
reflects shared decision making and social justice for a vulnerable population.
The second case study focuses on relationship-based care framed within a population-based
program. Helping elderly nursing home residents with chronic illnes