Community-Based Participatory Research: Lessons learned from a research partnership

Community-Based Participatory Research:
Lessons learned from a research partnership
with a Southwest Native American
intergenerational family intervention program
Nina Wallerstein, DrPH, Professor
Lorenda Belone, MPH, PhD, Associate Scientist
Master of Public Health Program, Center for Participatory Research
University of New Mexico
Kevin R. Shendo
Director, Department of Education
Pueblo of Jemez
New Mexico
Objectives of Presentation
Rationale for CBPR
Definitions and Principles of CBPR
Communities and How we Started
Co-development of Family Listening Program
Pilot Implementation and Lessons Learned
Perspectives from Stakeholders
– N Wallerstein: Principal Investigator, UNM
– L Belone: Navajo Scientist, UNM
– K Shendo: Community Co-Investigator, Pueblo of
Existence of health disparities undisputed: health status,
access to care, environmental conditions
– Top people live longer.
– They are healthier while doing so.
– Strong relationship between social status (SES)
and health
– Strong relationship between racial/ethnic status
and health
Heckler’s 1985 DHHS Report on Black and Minority Health, Civil Rights
Report, 1999; IOM Unequal Treatment, 2002; Healthy People 2010
Goal of Eliminating Racial and Ethnic Health Disparities
“The real challenge lies not in debating
whether disparities exist, but in developing
and implementing strategies to reduce
and eliminate them.”
—IOM Committee Chair
of health
Challenges for Bridging Intervention Science
to Practice: Need for CBPR
• Challenge of bringing evidence to practice
• Moving from efficacy to effectiveness trials
• Internal validity focus insufficient for translational
• External validity: Contextualization/Implementation
• Challenge of what is evidence
• Evidence-based Practice from Empirical Studies
• Practice-based and Culturally-based/Indigenous Evidence
• Challenge of one-way translation orientation
– Assumes community tabula rasa
CBPR Definition
“ Collaborative approach to research that equitably
involves all partners in the research process and
recognizes the unique strengths that each
brings. CBPR begins with a research topic of
importance to the community with the aim of
combining knowledge and action for social
change to improve community health and
eliminate health disparities.”
W.K. Kellogg Community Scholar’s Program (2001)
What it is and What it isn’t
• CBPR is an orientation to research
– Changes the role of researcher and researched
• CBPR is not a method or set of methods
– Qualitative and quantitative
– Epidemiology and intervention research
• CBPR is an applied approach
– Goal is to influence change in community health,
systems, programs, or policies
CBPR Principles
Recognizes community as unit of identify
Cooperative and co-learning process
Systems development & local capacity building
Long term commitment
Balances research and action
Israel et al, 1998 and 2008
CBPR/TPR Principles for Tribes:
 Tribal systems shall be respected and honored
 Tribal government review and approval
 Tribally specific data shall not be published without prior
consultation; data belongs to tribe
 Core Values: trust, respect, self-determination, mutuality of
interests, perspective taking, reciprocity
Moving from doing research “on”
communities to “with” communities.
CBPR/Community Engagement Steps:
1. Build Partnerships/Identify Research Questions
• Self-Reflection
– Our own intentions, capacities, and liabilities
– Our institution’s strengths and liabilities
• Identify Potential Partners (representing who?)
• Negotiate Health Issues (how decide?)
• Create and Build Participatory Structures
between Academia and Community
Control of budgets
Control of data
2. Participatory Data Collection
• Participatory Process that is most used
• Develop instruments with community
advisory board members (greater validity)
• Train community interviewers, survey data
collectors, focus group facilitators
• Job opportunities for community
• Enables better response rate
• Issues of confidentiality
3. Participatory Data Analysis
• Role of University expertise:
– Statistical programs (Quant/Qual)
– Present data in useable form for interpretation
– Train community members
• Role of Community expertise:
– Provide interpretation of importance that only
possible if from locality (local research
team/advisory committee)
– Protection of community
4. Participatory Dissemination
Accountability to communities and to
community protection
Community reports (print/videos/executive
summaries, etc)
Academic publishing issues(especially for
junior faculty)
Wallerstein, N.., Duran, B., Minkler, M., Foley, K., Developing and Maintaining Partnerships,
Methods in Community Based Participatory Research, Israel, B., et al (eds). San Francisco, Jossey
Bass, 2005
CBPR In Practice
Jemez Pueblo
Less than an hour
from ABQ
Ramah Navajo
Two hours from
Pueblo of Jemez
One of 19 Pueblos in New Mexico
3,700 Enrolled Tribal Members
Rural Environment
Traditional Form of Government: Political Leaders
Appointed by Spiritual Leaders on annual basis
80% Population Speak Towa Language
1999: Exercised self-determination in the taking over of
education systems/programs and health services
Education Systems: Tribal, Charter, Public and Bureau
Ten Year History Building Partnerships:
Jemez Pueblo: CDC Grant, 1999-2003
• Purpose: to better understand
community strengths/cohesions for
health, & identify cultural measures
• Qualitative Approach
• Over 60 key informants:
interviews and focus groups
• Findings:
• Multiple community and cultural
• Concerns: Loss of culture and
• Need to strengthen
communication between
• Tribal Advisory Committee
• Co-developed instruments
• Co-conducted interviews
• Co-analyzed data
Results :
• Pueblo of Jemez:
• Community Voices
• 2003 JAPH Publication
Reflections on Early Stages
• Lorenda:
– Started as a Graduate Student
– Raised in matriarchal society; became involved in
research in patriarchal society
• Nina:
– Challenge of an abstract grant
– Challenge of moving from University-driven agenda to
shared agenda
• Kevin:
– Important to build a trusting relationship
– Enforce Tribal ownership of Research
– Not to sacrifice the “vision” of the community and
Jemez Family Circle Program
Funding: 2005-2009
• National Institutes of Health partnership with Indian Health Services
• Native American Research Centers for Health
• Partners: MPH
• Pueblo of Jemez, Ramah Navajo Chapter
• Albuquerque Area Indian Health Board
• Extension of CDC Community Voices Grant
• National Institute on Drug Abuse (NIDA) project with the Anishinabe
people and their curriculum, the “Listening to One Another Project”
with Dr. Les Whitbeck.
– Anishinabe Listening Project found that parents and children
retained prevention messages and behaviors when cultural content
was most integrated in the curriculum.
Family Circle Program Purpose
This CBPR research project aims to co-adapt,
pilot, and implement a culturally-centered
intergenerational family intervention to reduce
alcohol and other substances use and abuse
among late elementary youth in partnership
between Pueblo of Jemez and UNM
Master of Public Health Program
Family Circle Program: Conceptual Model
Risk Factors
• Behavior Problems
• Academic
• Ineffective
•Abuse of Alcohol
• Availability of
• Alcohol Abuse
Family Circle
• Culture
• Language
• Stories/Values
Action Projects
• Attachment to School
& Family
• Self-Confidence
• Leadership
• Warm/Supportive
• Communication with
• Participation in
Community Events
•Participation in
Community Service
•Delayed Alcohol
& Substance Use
• Improved
Four Year CBPR Plan
Year One
Developed Tribal Research Team
Reviewed Anishnabe Curriculum
Conducted Focus Group Discussions
Year Two
Co-created Tribal Specific Curriculum
Co-created Evaluation & Process Tools
Years Three & Four
Piloted Hemish Curriculum
Conducted Evaluation (Outcome & Process)
Analysis of Evaluation
Dissemination of Results
Conducted Second Session Led by Jemez Team
Co-creation of Hemish Curriculum
1. Welcoming
2. Family Dinner
3. Hemish of Walatowa History
4. Hemish Way of Life
5. Our Hemish Vision
6. Community Challenges
7. Communication & Help Seeking
8. Recognizing Types of Anger
9. Managing Anger
10. Problem Solving
11. Being Different
12. Positive Relationships
13. Building Social Support
14. Making a Commitment
Structure of Each Session
Each session conducted by a
trained tribal facilitator and usually
in their own language
Start with Dinner
Sharing of Home Practice
Ice Breaker Activity
Activities: separate adult and
youth groups
Planning Community Action Project
Journals: adults & youth
Wrap-up and take home practice
Facilitator journal
FCP Program Slide - Altered
Session Five: Our Hemish Vision
•Engaged Participants in Community Visioning
•Identified strengths in Hemish of Walatowa people
•Created Personal Vision for the Future
Session Six: Community Challenges
•Identified Concern in the Community
•Identified People & Groups To Support Efforts to Improve
FCP Program Slide - Altered
Family Circle Program Evaluations
• Facilitator observations after each session
• Journals by the children after each session
• Interviews of Parent and Child (quantitative instrument)
– Pre-test prior to start of program
– Post-test at completion of program
• Three open-ended questions at end of program:
– to parents and child about each other (360 evaluation):
– Any changes in family, in child, in parent
Pre-post Results and Lessons Learned
• Child Anxiety Scale:
Was reduced upon completing the program (p-value =
• Example item: I’m afraid other kids will make fun of me
(decreased, p-value = 0.06)
• Child Coping with Depression Scale:
Felt more capable of coping with depression symptoms
upon completing the program (p-value =.02).
– Example item: coping with loneliness (increased, p-value = 0.06)
• Future potential implications for chronic disease, violence
and substance abuse
Qualitative Results and Lessons Learned
Enhanced pride in culture and language; & Increased self efficacy
and coping
• “I learned not to drink and to ask people for help and have
parents to take care of you.”
• “It felt very good because I finally learned about Hemish
culture”…”We learned our Indian names and what our Indian
names mean.”
Increased parent/child communication and positive family
dynamics; Increased pride in culture and history
• “I am taking how valuable it is to teach our children the
traditional way of life.”
• “Learned how to handle stressors in a good way.”
Importance of integrating cultural AND family strengthening
evidence for effective intervention program
Reflections and Lessons Learned
Lorenda Belone
Through this project:
• I received in-the-field learning experiences of the CBPR
challenges and benefits of conducting research with tribal
• I received, invaluable mentoring, which has produced in
me a constant need for reflexivity and sensitivity in always
examining who I am as a Native researcher working with
tribal communities, resulting in my dissertation work; and
• The reflexivity in my work has carried over into my
reflection in who I am as a Navajo woman and the
importance of the matriarchal roles of sister, daughter, and
mother in my family and community and the importance of
passing down these roles to my three daughters.
Reflections and Lessons Learned
Nina Wallerstein
Flexibility throughout the process
Continual reflection on power and decision-making
and knowing that university may have to step back
or out to shift ownership to tribe
Importance of long-term commitment
Challenge of publishing of data: academic versus
community needs
Importance of joining tribal cultural renewal
agenda in order to co-create effective program
Reflections and Lessons Learned
Kevin Shendo
In depth understanding of the research process
Opportunities and challenges with delivering
curriculum in the Jemez language
Coordinating program to fit needs of all
community schools
Exposing participants to learning in a immersion
setting enhanced with traditional foods
Pre-planning required for a traditional based
Just Some of the Hemish Family Circle Program Advisory Council and UNM
Many thanks to Pueblo of Jemez Advisory Council
and Facilitators
Anita Toya, Carol Gachupin, Harriet Yepa-Waquie, Towana
Yepa, Eleanor Tafoya, Missy Yepa, Leah H. Stevenson, Robert
Shendo, David Yepa Sr., Bessie Yepa, Tony Toledo, Mary
Margaret Shendo, Kevin Shendo, Janice Tosa, Marie Romero,
Rose Shendo, Eleni Fredlund, Eileen Shendo, Willie Waquie,
Dominic Gachupin, Brian Appell, Jemez Charter High School
Students, Jemez Department of Health and Human Services,
and Jemez Department of Education
University of New Mexico
Drs. Nina Wallerstein, John Oetzel, & Lorenda Belone (Navajo), and
Greg Tafoya (Santa Clara Pueblo), Rebecca Rae (Jicarilla Apache),
Scott Atole (Jicarilla Apache), Aprilshandiin Curley-Sherer (Navajo)