Family Quality of Life:
Annotated Bibliography
Jennifer A. Burhart, BA, Ed.M, PhD student
Counseling Educational School of Psychology
State University of New York at Buffalo
Jim Donnelly, Assistant Professor
Counseling Educational School of Psychology
State University of New York at Buffalo
Sally Speed, CDHS Unit Director
Medicaid Training Institute
Acknowledgement:
This research project was funded by the NYS Office of Children and Family Services,
Award: 27379, Project: 1029345, Chronic Care, HLTC03, through the Center of Human
Services, Research Foundation, Buffalo State College.
1
Table of Contents
Abstract…………………………………………………………………………………….1
Books………………………………………………………………………………………..2
Empirical Literature Reviews…………………………………………………………….4
Theoretical Literature…………………………………………………………………….37
Measurement
Literature…………………………………………………………………....…………….51
Websites……………………………………………………………………………………..58
2
Abstract
The following annotated bibliography was designed to inform the practice of Medicare personnel, as
well as various individuals serving in healthcare professions. Having a family member diagnosed with a chronic
illness is a devastating experience that can potentially have serious implications for the quality of life of not only
that ill individual, but for the entire family. This bibliography summarizes and critiques relevant literature that
might serve to guide the strategies employed by healthcare professionals when interacting with families dealing
with chronic or terminal illness. While it primarily highlights literature regarding families with children with
chronic illness, families dealing with chronic illness in other members was included as well.
The literature was retrieved through search engines such as PsychInfo, Ovid, and Medline, as well as
from reference lists of pertinent articles. Key words used for retrieval include “chronic illness,” “families with
chronic illness,” “quality of life,” “terminally ill children,” “managing chronic illness,” “pediatric palliative
care,” “patient distress,” “end-of-life care,” “children with cancer,” “family adjustment in chronic illness,”
“family support,” “perceptions of adjustment in illness,” “coping with chronic illness,” “life-threatening
conditions,” “long-term care for children,” “maternal health,” “family distress,” “measuring quality of life,” and
combinations of the aforementioned using “AND” and “OR” in the search engines. The bibliography was
divided into sections based on book reviews, empirical literature, theoretical literature, and literature pertaining
to measurement and assessment tools of quality of life, well-being, and life satisfaction.
Although this bibliography is not exhaustive of the literature available regarding quality of life of
families with chronic illness, it is intended to provide a general overview of the type of research that currently
exists in the field. This paper recognizes the importance of this field of research and the potential for effective,
collaborative approaches to evolve between individuals in various professions. Chronic illness can strike
anyone, at any time. Rather than fear this possibility, we must embrace it and act aggressively to investigate
what attributes consist of a “good” end-of-life. There is substantial variation in personal preference, yet the
ultimate goal remains the same: Live well and die well.
This bibliography can spark initiative in those
individuals who have a role in managing, intervening, and/or treating chronic illness to take this information and
embed it within their clinical practice.
1
BOOKS:
Caddy, G. R. and Byrne, D. G. (1995) (Ed.). Behavioral medicine: International
perspectives. Volume 3. Norwood, New Jersey: Ablex Publishing Corporation.
Drawing upon authors from North America, Europe, and Australia, the intent of this
book, according to the editors, is to present a broad overview of contemporary thought and
clinical expertise. Volume three addresses basic treatment approaches in behavioral medicine
including material from the gastrointestinal system, the genitourinary system, behavioral
pediatrics, addictive behaviors, and the respiratory system. Typically, each chapter defines the
topic and gives background information. The assessment procedure is introduced, various
symptoms are explored in some chapters, and then treatment interventions are introduced.
The chapter entitled, “Psychological and Behavioral Sequelae in Children with
Chronic Disease: An Interactional Model” outlines data that suggests an interactive analysis
of childhood chronic illness, as opposed to the historical psychopathology model, may be the
most effective model to increase prediction, identification, and treatment of a child with
chronic disease. Based on the premise that the child with chronic illness has the potential to
develop normally, the authors suggest that failure to do so is the result of specific, learned,
maladaptive behaviors, as opposed to personality traits. Empirical support for the
interactional model of chronic disease in children is addressed.
Chilman, C. S., Nunnally, E. W., & Cox, F. M. (1988) (Eds.). Chronic illness and
disability. Families in trouble series: Volume 2. Sage publications.
The editors assert that this series of books is designed to enhance the knowledge,
understanding, and skills of those in the helping professions in an effort to assist troubled
families. With an emphasis particularly on families in trouble, not just families, information
is delivered regarding the range of economic, employment, physical, behavioral, and
relational problems that are commonly endured by families today.
This volume addresses the impact of chronic and life-threatening illness on families
from a familtors assert that this series of books is designed to enhance the knowledge,
understanding, and skills of those in the helping professions in an effort to assist troubled
families. With an emphasis particularly on familie
, information is delivered regarding the range of economic, empl
yment, physical, behavioral, and relational problems that are commonly endured by
families today.
This volume addresses the impact of chronic and life-threatening illness on families
from a familtrouble or extreme stressors while they are raising children. Organized into five
sections, the first consists of overviews of the impact that the application of family theory to
concepts of child development and psychopathology has on traditional practices. Section two
is comprised of various frameworks offered for use in working with non-traditional
arrangements of the nuclear family. Family challenges such as physical and cognitive
handicaps, chronic illness, childhood obesity, emotionally disturbed parents, alcoholic
parents, and death of a parent are addressed in section three. Family adaptation/coping and
ways in which children may be compromised are discussed. Discussion regarding the
interaction between the nuclear family and larger systems follows in section four. Topics
2
such as the family in family therapy, families’ relationships with school and the legal system,
and family violence are highlighted. Section five presents other cultural and world
community issues, such as children in poverty, ethnicity, the immigration process, and
nuclear-age children and families. The editor notes that the some authors present findings
from research, some offer advice based solely on clinical experience, and yet others integrate
research with practical experience. Regardless of the authors’ approach, the underlying
premise of working through the family relationship system to better the lives of children is
maintained.
Mash, E. J. & Terdal, L. G. (1997) (Ed.) Assessment of childhood disorders. Third
edition. New York and London: The Guilford Press.
This volume explores the assessment of disturbed children and families from a
behavioral systems perspective. The book focuses primarily on the family and the broader
social environment as a context for understanding children’s strengths and weaknesses as
well as a target for assessment and intervention. Each chapter’s author introduces a
framework to guide assessment practice and research for the specific disorder, embedded in
empirical evidence. The focus is on assessment practices that can be used to channel clinical
interventions. The need for developmental and cultural sensitivity is emphasized throughout
the chapters. Childhood disorders that are reflected include behavioral disorders, emotional
and social disorders, developmental disorders, health-related disorders, children at risk, and
adolescent problems. In addition, a few chapters are devoted to issues related to assessment
of child physical abuse and neglect, child sexual abuse, and substance use in adolescents.
Mikesell, R. H., Lusterman, D., & McDaniel, S. H. (1995). Integrating Family Therapy:
Handbook of family psychology and systems theory. Washington, DC: The American
Psychological Association.
Perspectives from family psychology and systems theory are embedded within this
framework of approaches applicable to a variety of treatment issues. Authors explore clinical
principles of systems therapy, developmental issues in families, assessment and research in
family psychology, therapy with couples, gender and ethnic issues, medical systems, larger
systems, coercion and substance abuse, and future directions for family psychology and
systems. Both theoretical facts and practical advice are offered and coupled with case
examples. Most chapters are based on empirical research.
Molinari, V. (1995) (Ed.). Professional psychology in long-term care. New York:
Hatherleigh Press.
As aging is inevitable, the first section addresses the psychological assessment of long
term care patients, including chapters on assessment of psychopathology, neuropsychological
assessment, and medical assessment. Part two, which deals with the treatment of long term
care patients, is comprised of chapters on interventions for individual therapy, group
psychotherapy, those with behavioral disorders, counseling for dying patients, and some basic
psychopharmacology. The final section highlights professional issues in the management of
long term care patients, including private practice, ethics, the training of psychologists, the
role of culture and gender, potential clinical research issues in the future, and enhancement of
patients' quality of life.
3
Roberts, M. C. (1995). Handbook of Pediatric Psychology. Second Edition. New York,
London: The Guilford Press.
With forty chapters covering topics central to problems presented in pediatric
settings, the book is divided into six parts entitled “Professional Issues,” “Cross-cutting
Aspects,” “Prevention and Promotion,” “Physical Conditions: Research and clinical
applications,” “Developmental, Behavioral, and Emotional Problems,” and “Special Issues.”
Individual chapters range from ethical and legal issues, management of pain, grief and
bereavement, and prevention of injuries and disease, to cystic fibrosis, cardiovascular disease,
failure to thrive, sleep of disturbances, autism and mental retardation, and pediatric
pharmacology and psychopharmacology.
Wolchik, S. A., & Sandler, I. N. (1997). (Ed.). Handbook of children’s coping: Linking
theory and intervention. New York and London: Plenum Press.
In an attempt to review what is known about factors that affect children’s adaptation
to major stressful situations, the contribution of family stressors, physical and environmental
stressors, and social environmental stressors are highlighted. The author’s present evidence
regarding the number of children experiencing the stressor and offer a critical analysis of the
research on the short and long term effects of the stressor on mental health. Literature on each
stressor is reviewed in addition to the impact that coping, resources, and child adjustment
might have on each other. A critical review of the literature on preventative interventions is
articulated, as well as suggestions for future research.
EMPIRICAL LITERATURE REVIEWS:
Balling, K., & McCubbin, M. (2001). Hospitalized children with chronic illness:
Parental caregiving needs and valuing parental expertise. Journal of Pediatric Nursing,
16, 110-119.
Parents of children with chronic illness were surveyed to determine their perceived
expertise in caring for their children through the eyes of healthcare professionals. A second
objective was to describe parents’ desired degree of participation in the care of their children.
The authors included a literature review and explained that the review was limited to articles
from 1988-1995, however no reason was included as to why 1995 was the cut-off. Specific
demographic information was provided regarding the sample, but the authors’ yielded a low
response rate and did not speculate as to why. The instrumentation was described in detail
with reliability and validity information highlighted for each. Examples of items on each
instrument were also included. The greatest flaw in the methodology proved to be the
exclusion of the authors’ working definition of chronic illness!
Statistics described in the results section were highlighted in table form. The
discussion section did not refer the reader back to the original research question(s) and
introduced some new literature that was not provided in the introduction, but was thorough
overall. Parents reported feeling valued by attending physicians and nurses, however
experienced a lack of validation in their caregiving by medical students and residents. Results
revealed that parents yearned for high levels of control and participation in their child’s care.
This was especially prevalent in the domains focused on information sharing and technical
4
care. Finally, the authors discovered that parents often perceive nurses as too busy to attend to
their needs despite feeling valued by them. Conclusions highlighted the necessity of making
parents an integral part of the healthcare team. Limitations of the study were discussed, as
well as directions for future research.
Bomalaski, M. D., Teague, J. L., & Brooks, B. (1995). The long-term impact of
urological management on the quality of life of children with spina bifida. The Journal
of Urology, 154(2), 778-781.
With significant medical advancements now available in the treatment of spina bifida,
patients’ lives are extending beyond infancy as was previously expected. These authors were
interested in the quality of lives of adult spina bifida patients as they attempt to function with
some normalcy in today’s society. Although the worldwide incidence of spina bifida (1:1000)
might convince an audience that it is an important disease to study, the authors offer little by
way of a literature review in their introduction to establish the importance of the study.
Bomalaski, Teague, and Brooks (1995) attempt to justify this by indicating that little
information regarding the ability of these patients to function in adult society is available.
Literature is reviewed, however, in the discussion section which would have been more
helpful in the beginning of the article.
Information was collected and reviewed on 20 female and 18 male patients over the
age of 18. The sample was stratified according to type of urological management. No
demographic information on the sample was provided. A questionnaire was mailed to each
individual comprised of questions regarding educational achievements, living arrangements,
employment, and interpersonal relationships, yet the reader is not given any example(s) of
questionnaire items. Age matched comparisons were made to the general population on
educational achievement and living arrangements. Independent variables were urinary
management and gender and continence status, while dependent variables included were
education level, living arrangements, employment status, and sexuality.
The effect of each dependent variable was clearly illustrated in its own table under the
results section. Findings revealed that spina bifida patients achieve the same educational
goals as nonhandicapped peers, but expressed frustration that medical and surgical therapy
delayed education. Only 32 percent of patients examined were living independently, with a
trend of more females attaining greater independence. Although little data is apparently
available regarding the employment of patients with spina bifida, this study concluded that
extended schooling with special vocational guidance followed by job placement was
successful. More male patients (65%) were unemployed as compared to females (33%). A
large percentage of the men reported no sexual interaction (69%) while only 20 percent of the
female patients were not sexually active. Many patients expressed frustration with attempting
to become independent, regarding continence as secondary in importance to being able to
function in society. A broad objective for urologists is provided, but directions for future
research are lacking.
5
Burke, S. O., Kauffmann, E., Costello, E., Wiskin, N., & Harrison, M. B. (1998).
Stressors in families with a child with a chronic condition: An analysis of qualitative
studies and a framework. Canadian Journal of Nursing Research, 30(1), 71-95.
The authors’ designed this article to present a research-based framework, the Burke
Stressors and Tasks Framework, which attempts to explain some of the potential stressors
that families with a child with chronic illness face. A brief description of the development of
this framework is given and referenced for a more thorough description. In order to confirm
the research base of this framework, the authors’ sought to confirm, refute, or alter the
content validity and completeness of the Burke Stressors and Tasks Framework for Families
with a Child with a Chronic Condition by comparing it to other qualitative research findings.
All studies published between 1990 and 1994 that took a descriptive, inductive approach to
the study of concepts related to stressors or within these families were considered. Inclusion
and exclusion criteria are described. Inclusionary studies with relevant research questions,
samples, analyses, and results are displayed in a table.
After each study’s relevant findings were noted, the stressor related results were used
as data. The unit of analysis was the researchers’ categories and codes. Each data segment
was matched beside the Burke category to which it best corresponded. Data segments that fit
in more than one place were not repeatedly matched, but, rather, one spot was chosen. Based
on the findings, some descriptors in the Burke Framework were polished. The refined
framework is presented in a table. The Burke Framework successfully accommodated all
stressors that were noted in the literature. The authors’ contend that the stressors are not
developmentally specific. In addition, although the framework was confirmed through
literature that consisted of samples with a wide range of families, settings, and various child
chronic conditions, the authors’ indicated that nurses have utilized the framework with
families recovering from a child sustaining an acute injury, as well as families of an adult
with a chronic condition. It is suggested that the comprehensive descriptions of the processes
families use to deal with the stressors be documented in the near future.
Combs-Orme, T., Heflinger, C. A., & Simpkins, C. G. (2002). Comorbidity of mental
health problems and chronic health conditions in children. Journal of Emotional and
Behavioral Disorders, 10(2), 116-125.
These authors were striving to compare the relationship between mental health
problems and health status in a sample of low income children with and without serious
emotional disorders (SED). Data was obtained from two states participating in The Impact
Study (part of a national study on services available through Medicaid), Tennessee and
Mississippi, to recruit a sample of Medicaid children for the study. The reason(s) for electing
Tennessee and Mississippi were not provided. Methodologically, this study’s strength lies in
its stratified random sample. The way in which subgroups were defined was clear. A total of
965 parents/caregivers were interviewed. The recruitment method was highlighted and data
was apparently collected from parents using a structured interview including questionnaires.
The authors’ failed to describe who conducted the interviews and what, if any, training the
interviewers received. Questionnaires were adequately described, as well as the data analyses
which included MANOVA and multiple regression analyses. Results indicated parents of
children with SED were significantly more likely to report chronic health conditions in their
children than parents of children with no mental health problems. Potential reasons as to why
6
discrepancies were noted between this research and similar studies were speculated.
Consistencies among this and previous research were also presented. The greatest overt
weakness lies in the fact that parents randomly named their children’s chronic illnesses as
opposed to selecting the condition from a previously developed list. Thus their definition of
chronic illness was likely varied. In addition, parent reports regarding their children’s
conditions are often different from the child’s report. Finally, implications for practice are
described. Overall, this study effectively recruited a large sample which is often difficult to
obtain and has few notable flaws.
Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2002). Family
perspectives on the quality of pediatric palliative care. Pediatrics and Adolescent
Medicine, 156(1), 14-19.
Recognizing the need to improve pediatric palliative care, the authors interviewed 68
family members of 44 deceased children seeking suggestions for improvement in quality of
end-of-life care. English and Spanish speaking family members of deceased children who
received treatment at Lucile Salter Packard Children’s Hospital (LSPCH) were recruited for
this qualitative study. The assessment was acknowledged as exploratory and descriptive in
nature, and the authors’ chose to exclude quantitative analyses due to the small number of
respondents. Participants were asked questions regarding the course and treatment of their
child’s illness, interactions with hospital staff, quality of support for their child and siblings,
family’s experiences at time of child’s death, and follow-up support. Most questions were
assessed using a Likert type scale; however the families were asked to elaborate when
necessary. Details regarding whether or not interviewers were trained in the interviewing
process were vague. Interviewers were also described as conducting “most” of the interviews,
but who conducted the remaining interviews was not divulged. Interview question topics
were stated, but example questions were not disclosed.
Parents consistently described effective caregivers as honest, clinically accurate,
compassionate, and available. Families reported lasting emotional distress over isolated
incidents such as insensitive delivery of bad news, poor communication of updates with their
children, and feeling as though they were dismissed or patronized. Delivery of bad news was
desired by a familiar person in a compassionate and caring fashion, with the exclusion of
technical language. Families noted that siblings require better care and support from staff
than given. Language barriers that existed among some Spanish speaking families were
detrimental in their ability to fully understand their child’s medical condition, treatment, and
prognosis. Staff members that followed-up with families following death was considered
quite meaningful and helpful.
Despite the little research available that has addressed pediatric palliative care, the
study should be considered in light of its limitations. The recruitment response rate was low
and multiple family members were interviewed in some cases. Standardized measures were
not used, thereby bringing into the question the reliability and validing theories within and
among cultures. Various definitions of QoL are provided, as well as definitions of HRQOL
that distinguish between the two concepts. In general, while QoL typically includes physical,
psychological, social, and spiritual dimensions, HRQOL is often conceptualized as physical
problems (symptoms, pain), functional ability (activity), family wellbeing, spirituality,
treatment satisfaction, future orientation, sexuality and intimacy, social functioning, and
7
occupational functioning. A brief literature review is included that reviews selective studies
that focused on QoL measurement and instruments.
The purpose of the study was to examine cross-cultural measurement of QoL and
issues to consider in adapting QoL instruments. Conducting a literature review using
variations of the terms “quality of life” and “cross cultural research” yielded studies that led
the authors to highlight ten issues to be considered in validating instruments to measure cross
cultural QoL. Study inclusion criteria were not provided. A paragraph is devoted to
explaining each of the ten issues to be considered, including phenomenon of interest, crosscultural versus cross-national measurement, salience of QoL to a particular population,
conceptual equivalence, cultural hegemony versus cultural validity, cultural equivalence
versus verbal equivalence, fidelity versus appropriateness, privacy versus disclosure,
appropriateness of format, and resource utilization for translations.
This article provides the reader with a brief overview of the ten issues that, as the
authors propose, could assure validity for cross-cultural research. None of the issues are
described in great detail, but the reader can obtain further information from references cited.
The paper makes a contribution to an area of the literature that is in need of development.
Coyne, I. T. (1997). Chronic illness: the importance of support for families caring for a
child with cystic fibrosis. Journal of Clinical Nursing, 6(2), 121-129.
This review explores the literature that has examined the adaptation process and
coping strategies employed by families who are caring for a child with cystic fibrosis (CF).
Psychosocial effects of cystic fibrosis on families are described with an emphasis on feelings
of denial. Denial is suggested as the least understood and most poorly dealt with reaction
following cystic fibrosis diagnosis. The review indicates that previous research has primarily
focused on maladjustment in children with chronic illness as opposed to identifying the
coping strategies that have been effective in helping other families cope. Studies have
highlighted the use of assigning meaning to the illness by developing an understanding of the
child's condition, treatment, and limitations and sharing the burden of the illness with family
members or an individual outside the family. Integrating the complex therapy into a routine
schedule has minimized the impact of illness and promoted the child's transfer into society.
Implications for nurses include providing guidance, factual information, and support as soon
as a child is diagnosed with CF. Assessments of the parents understanding of the illness and
their ability to cope is a critical responsibility of the nursing staff. Parent support groups are
recommended. To address parents' feelings of being perceived as incompetent, it is essential
that nurses provide positive feedback to them regarding their role in the healthcare of the
child. Sensitive, personalized healthcare provided by the nursing staff comprises the core of
effective care for these families.
The authors’ definition of chronic illness is presented in the first paragraph, providing
the reader with their understanding of chronic illness as opposed to leaving the definition to
the readers’ discretion. The audience will not question the importance of this article, as
Coyne (1997) provides evidence for the psychological, physical, and financial burden that
families of children with cystic fibrosis are experiencing through the literature review. Nurses
might find Coyne’s advice particularly pertinent. The author designates the last page and a
half to highlighting areas in which nurses and healthcare professionals can effectively
8
intervene with families of children with CF and denotes mechanisms by which interventions
can take place. Overall, this is a thorough paper worth reading.
Crain, N., Dalton, H., & Slonim, A. (2001). End-of-life care for children: Bridging the
gaps. Critical Care Medicine, 29(3), 695-696.
A survey questionnaire was designed to elicit attitudes and perceived practices of
physicians and nurses caring for children at the end of life. The survey questionnaire revealed
gaps between theory and practice and discrepancies between practitioners of different
disciplines and those with varied years of experience. The authors described recent
illustrations in the literature indicating that medical education and training in end-of-life
issues is lacking. The results of the study evoke concerns about the consistency of end-of-life
care and communication between professionals and families of critically ill children.
Davies, Betty & Connaughty, Sharon (2002). Pediatric end-of-life care: Lessons learned
from parents. Journal of Nursing Administration, 32(1), 5-6.
As a published study, albeit brief, this article has several gaps. Responses of parents
of 45 children who died during a two year period were elicited via a parental questionnaire.
Details of the questionnaire, such as by whom and how was it developed, who administered
it, and sample questions, are obsolete. Both Likert-type and descriptive responses were
apparently required in an effort to document the needs of families with a dying child. Lack of
sample demographics creates another pothole.
It is the reader’s responsibility to determine what data analysis methods were
employed, if at all. Results were presented in percentages. Only one-fifth of parents were
satisfied with the staff’s communication skills. Parents reported that emotional support was
lacking, as well as adequate information about the child’s deteriorating condition. Parents’
noted a desire for one or two staff members to be assigned to a family, thereby allowing for a
personal relationship to develop throughout the course of illness. At the time of the child’s
death, parents wanted as much time as they needed to be with the child in private. Following
death, parents reported much appreciation for those staff members who followed up with the
family in the form of cards, letters, and/or phone calls. In conclusion, the authors stated that
“acts of human kindness,” such as compassion, gentle concern, and sense of humor, resulted
in greater satisfaction with care. Despite the lack of some critical information, the qualitative
responses that were shared were rich and enable outsiders to stop and imagine being in the
shoes of a parent with a dying child.
Diehl, S. F., Moffitt, K. A., & Wade, S. M. (1991). Focus group interview with parents of
children with medically complex needs: An intimate look at their perceptions and
feelings. Children’s Health Care, 20(3), 170-178.
Children with chronic illness require specialized, and sometimes complex,
comprehensive care. As help is needed to care for these patients from professionals,
paraprofessionals, friends, and family members, family-centered care has been recognized as
the most appropriate method of serving the children with the needs of the entire family in
mind. Diehl and her colleagues (1991) initiated focus group interviews with eighty caregivers
representing 98 medically complex/technology-dependent children to elicit parents’
perceptions of their own needs. Nine focus sessions were conducted in six sites throughout
9
the state of Florida. Analysis revealed that 12 categories were identified as needs, with the
most overwhelming concern being deterioration of the family structure. Other major needs
identified were illness specific information, equipment, case management and knowledge
related to professionals, financial assistance, educational needs, medication and pain
management, hospitalization, daily physical needs, child’s emotional/communication needs,
growth and development, and death and dying. The authors walk through each of these 12
broad categories and explain more specific issues that parents addressed under these
headings. As in much of the literature, a common theme that should be extracted from
hearing the parents’ voices is that accessing services and coordinating them with other
services needed poses a great problem. Training packages for parents that address specific
needs of a child with a particular illness were recommended, however it would have been
helpful for the authors to brainstorm a starting point for the collaboration of consistent and
comprehensive care. As this article was published in 1991, it is now 12 years later and similar
themes are reoccurring in the literature.
Fang, C. Y., Manne, S. L., & Pape, S. J. (2001). Functional impairment, marital quality,
and patient psychological distress as predictors of psychological distress among cancer
patients' spouses. Health Psychology, 20(6), 452-457.
In an effort to gain an understanding of what factors place certain individuals at risk
for developing psychological distress when their spouses' are undergoing treatment for
cancer, the authors proposed a model depicting how spouse distress might develop. Their
hypotheses stated that the association between patient physical impairment and spouse
distress is mediated by patient distress and spouse perception of marital quality. Thus their
hypothesis contended that higher levels of patient physical impairment would be associated
with greater patient distress, which in turn would be associated with reduced martial
satisfaction on the part of the healthy spouse.
The sample consisted of 197 cancer patients and their spouses who were assessed near
the time of diagnosis, and then again at three months and six months post diagnosis. The
Psychological Distress subscale of the Mental Health Inventory was used to assess anxiety,
depression, and loss of behavioral/emotional control in both patients and spouses during the
past month. The Dyadic Adjustment Scale was given to spouses at all three time points to
measure satisfaction with intimate relationships. Finally, the physical limitations subscale of
the Cancer Rehabilitation Evaluation System was completed each time by patients. It was
designed to elicit difficulties in ambulation, daily activities, recreation, pain problems, and
problems with eating and weight loss.
Results offered partial support for the authors' hypotheses. Higher levels of patients’
functional impairment were indeed associated with greater patient psychological distress.
Consequently, greater patient distress was related to poorer spouse marital quality at all time
points. There was a lack of support for the hypothesized relationship between marital quality
and spouse distress. Analyses revealed that patient distress levels, as opposed to marital
quality, mediated the impact of functional impairment on spouse distress at all time points.
Explanations are offered for this finding.
Limitations of the study include the possibility that the variables such as patient
distress, marital quality, and spouse distress could operate in a different direction than that
tested. The sample size was noted as insufficient for examining longitudinal modeling of the
10
psychological variables. Potential sociodemographic differences were not accounted for,
which necessitates further research given that this sample was ethnically homogeneous, fairly
well educated, and evidenced greater marital quality than the general population. Finally,
authors highlighted the susceptibility of specification search, a structural modeling procedure,
to capitalization on chance.
Recommendations for future research indicate that other variables such as coping
style or social support might influence spouse distress. In addition, caregiving burden is
inevitable and warrants further attention.
Fisher, H. R. (2001). The needs of parents with chronically sick children: A literature
review. Journal of Advanced Nursing, 36(4), 600-607.
This review documented the scarcity of research regarding the needs of parents with
chronically sick children. Articles written in the English language that were published and
focused on the needs of both parents with at least one chronically ill child were included for
review. Articles were excluded that were published prior to 1985, examined the experiences
of other family members or healthcare professionals, examined the experiences of parents
exclusively prior to or during the diagnosis of the child’s illness, or concentrated only on the
experiences of one parent. The literature search yielded eight articles, which are conveniently
listed in table form. The table highlights the author, purpose, design, participants, and
findings of each study.
Three major themes transpired including the parents’ needs for normality and
certainty, the need for information, and the need for partnership. The need for normality and
certainty was marked by a lack of control causing major stress among parents. Following the
diagnosis, parents are often met with relief because uncertainty no longer exists. For others,
major lifestyle changes were implemented after diagnosis to signify a new sense of normalcy.
Parents regarded the need for information about their child’s condition and treatment as
crucial, but were often dissatisfied with the information they received, found it difficult to
obtain the information, or felt they were given either inaccurate information or information
too quickly. The desire of parents to be regarded as partners in the care of their child was a
continual theme that emerged. While parents recognized the expertise of the healthcare
professionals, they also expressed the desire to be recognized as an expert in the management
of their child’s illness.
This article is recommended for healthcare professionals involved in the treatment
and management of chronically ill children. It is a brief, but thorough read that highlights
potential coping mechanisms that may be employed by parents of these children. The author
noted that this body of research was conducted in the United States or Canada and thus
should not be automatically implicated across cultures. As a result of excluding research that
explored the needs of one parental caregiver, the conclusions offered are highlighted in light
of the probable differences in experiences of single parents caring for a chronically ill child.
Frank, R. G., Thayer, J. F., Hagglund, K. J., Vieth, A. Z., Schopp, L. H., Beck, N. C., et
al. (1998). Trajectories of adaptation in pediatric chronic illness: The importance of the
individual. Journal of Consulting and Clinical Psychology, 66(3), 521-532.
This study was designed with the purpose of employing growth modeling, which
recognizes individual variation in growth but also within-subject differences by tracking the
11
progress of individual participants over time. Children (n=129) who were newly diagnosed
with juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM)
were enrolled in this longitudinal study examining the process of adaptation to chronic illness
in the children, as well as their parents and families. A healthy control group (HC; n=62) was
included. The authors hypothesized that individual differences in adaptation would evolve,
evidenced by the three groups exhibiting different patterns, or trajectories, over time.
This study was unique in that the fathers of the sick children completed
questionnaires, as well as the mothers. Fathers’ perceptions/opinions often appear to be
excluded from the literature. Measures assessed child behavioral and physical functioning,
parental psychological functioning and coping, and family adaptability and cohesion.
Analyses showed that adaptation to chronic illness over time was more dependent on
individual differences than on common characteristics of the illness. While child and family
adaptation trajectories were not associated with disease variables, parental trajectories were
associated with diagnosis and disease course. In regards to diagnostic group, parents of
children with JRA demonstrated poor adaptation. JRA often involves a physical disability
that apparently may affect adaptation more so than the life-threatening aspects of IDDM.
Children within the best functioning adaptation patterns were significantly younger than
children within the worse functioning groups. Lower self-ratings of dysphoria and anxiety
were exhibited by mothers of children within the best functioning trajectory and across
adaptation patterns, mothers’ dysphoria and anxiety were highest at the time of their
children’s diagnosis.
Limitations were acknowledged and include small samples sizes, as well as a small
number of measures lacking sensitivity. Furthermore, one and two-parent households were
not classified as two distinct groups. This variable could affect adaptation depending on
whether or not a mother and/or father are running the household.
Frankel, K., & Wamboldt, M. Z. (1998). Chronic childhood illness and maternal mental
health – why should we care? Journal of Asthma, 35(8), 621-630.
It is well known that pediatric chronic illness affects family functioning. What is less
clear, however, are the specific factors that affect family functioning and the degree to which
each individual factor has an effect. Frankel and Wamboldt (1998) examined predictive
factors that may contribute to the impact of childhood asthma on the family, including
severity of illness, family SES status, family structure and social support, child’s emotional
characteristics, parent’s physical health, family functioning, and maternal psychological
distress. A sample of 70 children were recruited from a tertiary care center treating children
with asthma and other respiratory diseases. Demographic information is provided, but it is
worth noting that 64 of the 70 parents that completed questionnaires were mothers.
Children and parents completed separate series of questionnaires. The authors’ noted
that “children who could read” were given the questionnaires to complete. Nothing is
mentioned regarding how many children could not read or how they completed the
questionnaires in such a case. Each measure that was utilized is described. Stepwise multiple
regression analyses were run to determine the effects of the independent variables on the
Impact on Family Functioning Scale (IOF), and the proportion of variance accounted for in
the dependent variables. A follow-up analysis examined the same dependent variables with
the parent Psychiatric Symptom Index (PSI) as the dependent variable was performed. All
12
results of the regression analyses are presented in table form. Results indicated that the only
variable that significantly predicted the impact on the family was the parent’s PSI and the
amount of social support they reported. Child’s rating of general family functioning was the
most salient variable accounting for variance in parental distress. The amount of asthma
morbidity did not directly impact the family, nor did the extent of the child’s disability.
The findings of this study are compared to previous research and possible
explanations are described for varying results. Limitations are highlighted which include the
non-random sample, cross-sectional data, and the way in which the IOF and PSI are both selfreports of the same informant. This study presents opportunities for future research to attempt
to replicate these findings and directly predict what accounts for the extent to which families
are able to cope with a child’s chronic illness. These findings may not be generalizable
considering that other chronic illnesses can be more limiting than asthma, depending on the
severity of disease.
Freda, M. C. (1998). Can patient education help mothers of sick children cope? MCN,
The American Journal of Maternal/Child Nursing, 23(1), 52.
An investigation of the best way for nurses to help parents who are caring for a
chronically ill child was undertaken by a cohort of nurse faculty and practicing nurses at
Strong Memorial Hospital and the University of Rochester in New York. COPE (Creating
Opportunities for Parent Empowerment) was created and then tested in an experimental
design. COPE is a comprehensive program designed to educate parents about various
components of the effects of hospitalization on children as well as changes or losses
experienced by parents. 30 mothers were randomly assigned to receive COPE or the usual
care.
Results indicated that mothers educated through the COPE program gave significantly
more support to their children, exhibited less negative emotions, reported less parental role
change and parental stress, and exhibited less behavioral change. The researchers are
currently implementing this intervention with larger sample sizes to ensure that the positive
results obtained here will be applicable.
Greeff, A. P. (2000). Characteristics of families that function well. Journal of Family
Issues, 21(8), 948-963.
Using the Circumplex Model (Olson, Russell, & Sprenkle, 1989) which describes
family functioning in terms of family cohesion and adaptability, the study investigated how
families function and those family variables that would make the largest contribution in
predicting the level of family functioning. Family resources, family coping strategies, and
family and marital satisfaction characteristics were assessed across four family
developmental stages: married couples without children (stage 1), families with the oldest
child not yet in school or in primary school (stage 2), families with the oldest adolescent still
in the home (stage 3), and families with the oldest child having left home (stage 4). Selfreport questionnaires were used as the method of measurement. The dependent variable,
family functioning, was evaluated with the Family Adaptability and Cohesion Scales.
Significant differences among stages were found in married couple average scores for
adaptability (stage 1 more than stages 2 and 3), communication in the marital relationship
(stage 1 more than stages 2 and 4), satisfaction with the quality of time/leisure time, and
13
financial circumstances (stage 4 more than stage 2). In terms of gender, higher adaptability
scores were found for men in stage 1 than stages 2 and 3 and women in stage 1 were more
satisfied with family roles than women in stages 2 and 4. Men reported more satisfaction than
women with the communication in the marital relationship. The men also gave significantly
higher scores than women did for their families’ passive acceptance of problem situations and
the quality of household circumstances. Women attached more value to the importance of
religion. According to the husbands, family strengths such as loyalty are also important for
good family functioning. Wives said that a good relationship with family and friends is
important.
Heymann, S. J., Earle, A., & Egleston, B. (1996). Parental availability for the care of
sick children. American Academy of Pediatrics, 98(2), 226-230.
Though research has examined the effects of parental work conditions on children,
these authors contend that it has not explored how working conditions affect the ability of
parents to care for chronically ill children. Thus the aim of this article was extended to do just
that. Using two national surveys, the household component of the National Longitudinal
Survey of Youth (NLSY) and the National Medical Expenditure Survey (NMES),
complementary information regarding the care of sick children was collected. The sample
consisted of working parents with children under the age of 18. An employed parent was
defined as one who works more than 20 hours per week and is not self-employed.
The conclusions are centered on the drawbacks of the Family and Medical Leave Act
(FMLA) with regard to this sample. Despite the FMLA requirement that stipulates employers
must provide up to 12 weeks of unpaid leave to those who have major illnesses or whose
immediate family members have major illnesses, the FMLA has several limitations. Children
apparently have many frequent common illnesses that require care. Since the majority of
children do not have major illnesses, they are excluded from FMLA. Other components of the
FMLA are addressed and the implications for parents caring for sick children are described.
The authors conclude that if parents are unable to care for their sick children, they
could be sent to school or daycare further exasperating the prevalence of the illness. Steps are
recommended for the increased ability of working parents to take leave to care for sick
children.
Hoekstra-Weebers, J., Jaspers, J., Kamps, W. A., & Klip, C. (1999). Risk factors for
psychological maladjustment of parents with children with cancer. Journal of the
American Academy of Child & Adolescent Psychiatry, 38(12), 1526-1535.
This cohort of authors was determined to examine the risk variables for future, more
immediate, and persistent psychological distress of parents of pediatric cancer patients.
Subjects included 66 mothers and 62 fathers who completed the following questionnaires at
the time of diagnosis (T1) and 12 months later (T2): General Health Questionnaire,
Questionnaire of Recently Experienced Events, State-Trait Anxiety Inventory, the Rosenberg
Self-Esteem Scale, Scale for Interpersonal Behavior, Utrecht Coping List, and the Social
Support List Interactions and Discrepancies.
14
Personality, coping styles, and social support accounted for a significant increment in
the prediction of fathers’ future distress beyond initial symptom level. There was no
significant gain for mothers on these variables. Parents scoring high on trait anxiety were
more at risk for psychological distress. Mothers who used assertive behaviors less frequently
with time were at risk. Interestingly, fathers who sought social support shortly after hearing
their child’s diagnosis were at increased risk for later development of psychological
problems. In addition, fathers who were dissatisfied with received support at diagnosis and
continually grew more dissatisfied were at increased risk. In contrast, mothers who sought
less support at diagnosis were at higher risk. Unpleasant events occurring before diagnosis
had long-lasting negative effects on fathers’ adjustment, but pleasant events had long-lasting
negative effects on mothers’ adjustment. None of the demographics taken into consideration
were among predictor variables. Limitations and strengths of the study were emphasized.
Hunfeld, J. A. M., Perquin, C. W., Bertina, W., Hazebroek-Kampschreur, A., van
Suijlekom-Smit, L., Koes, B., van der Wouden, J. C., & Passchier, J. (2002). Stability of
pain parameters and pain-related quality of life in adolescents with persistent pain: A
three-year follow-up. The Clinical Journal of Pain, 18(2), 99-106.
In an effort to test the hypothesis that pain parameters, pain-related quality of life, and
impact of pain on the family would deteriorate over time in adolescents with persistent pain,
the authors implemented a three year longitudinal design. A sample of 42 adolescents
completed questionnaires regarding background factors such as age and sex, pain
characteristics, and pain-related quality of life. In addition they kept a three week pain diary
each year, in which pain was recorded three times daily. An interview was conducted by a
health care psychologist concerning the impact of pain on everyday life.
Overall, adolescents with persistent pain had mild, intense, and frequently occurring
pain. This negatively impacted five of six domains of the quality of life scale used, including
psychological functioning, functional status, and somatic functioning. Social functioning was
not affected. Contrary to the hypothesis, pain, pain-related quality of life, and impact of pain
on the family remained stable across the three assessments. Many adolescents were found to
use self-management strategies, and thus adopting to the pain.
Consequently the authors concluded that adolescents with persistent pain do not fit into the
definition of patients with chronic intractable pain, who are characterized by poor coping
with pain without a clear somatic cause.
As recruitment was dependent on the willingness to participate in a time-consuming
diary and questionnaire study, the authors noted the possibility that selection bias was
introduced which could affect the generalizability of the results.
Jassak, P. F., & Knafl, K. A. (1990). Quality of family life: Exploration of a concept.
Seminars in Oncology Nursing, 6(4), 298-302.
Without an abstract, it is difficult to initially glean what exactly the authors’ purpose
is. While researchers have devoted attention to the impact that an individual’s chronic illness
can have on the family, as well as the coping behaviors employed by family members, Jassak
and Knafl (1990) pointed to a lack of studies that are initiated from an exclusive quality of
life perspective. Further justification for this article is provided as the authors continue to
explain that family life is an integral part of a chronically ill patient’s life, yet the quality of
15
life research that has been conducted has primarily focused solely on the ill individual. These
loopholes lend themselves to this article which reviews literature related to family responses
to chronic illness, with the goal of developing guidelines for understanding and assessing
quality of family life.
Problems with defining quality of family life are discussed and characteristics that
may affect quality of family life follow. The latter is also listed in table form. The authors’
devoted a portion of their review to measurement of family functioning. Clinically relevant
family assessment instruments are listed. The article concludes with strategies for nurses’
intervention. For healthcare professionals interested in the exploration of quality of life
issues, this article extends that concept to the family which is of considerable importance.
Jessop, D. J., & Stein, R. E. K. (1994). Providing comprehensive health care to children
with chronic illness. Pediatrics, 93(4), 602-607.
The Pediatric Ambulatory Care Treatment Study (PACTS) was a randomized trial of
two modes of treatment for children with chronic physical disorders. Half of the children
received Pediatric Home Care (PHC) and the other half received standard care (SC). The
PACTS intervention was described in detail. Using a pretest-posttest randomized control
trial, the PHC program at Bronx Municipal Hospital Center was assessed and compared to
SC. The investigators were seeking to illustrate that this comprehensive outreach program
was more effective in providing complete care, as well as reducing unmet health needs, than
the traditional care. Minimal literature was reviewed in a somewhat bulleted fashion. 219
children, aged birth through 11 years, with chronic physical conditions were enrolled in the
study. A baseline interview was conducted with 209 of the children, while data was collected
from 188 after six months, and 181 at the one year interview.
The analyses revealed that the PHC program was more effective in providing
traditional medical service, in addition to psychological and social support to the families.
Jessop and Stein (1994) noted that differences between the groups at later timepoints
reflected intervention effects because enrollment data between the groups were comparable.
A positive effect on children’s mental health, satisfaction with care, and mothers’ mental
health was highlighted. Additional reproductions of this intervention program are
recommended to avoid secondary morbidity in children with chronic illness. The controlled
design makes a nice contribution to the literature and provides a basis from which future
research can be conducted.
Katz, D. A. & McHorney, C. A. (2002). The relationship between insomnia and healthrelated quality of life in patients with chronic illness. The Journal of Family Practice,
51(3), 229-235.
The authors investigated the association between insomnia and health-related quality
of life (HRQOL) in patients who were given a diagnosis of 1 or more of 5 chronic medical
and psychiatric conditions. In addition, they sought to compare the decrease in quality of life
associated with insomnia with that associated with other chronic conditions. A crosssectional analysis of Medical Outcomes Study data was use. HRQOL was measured using a
36 item generic quality of life measure. Insomnia was defined on a 6-point categorical scale
with responses ranging from “all the time” to “never.” Multiple linear regression was used to
determine that 16% of the 3445 patients had severe insomnia and 34% mild insomnia.
16
Insomnia was independently associated with a significant decrease in overall QoL for patients
with chronic illness. Generalizability may be limited due to the fact that the MOS sampled
only patients with 5 chronic conditions who were insured and had a continuous relationship
with a provider in 3 large urban areas. Sleep problems were also assessed through self report.
Since the analysis is based on cross sectional data, the authors caution that the possibility of
decreased quality of life leading to insomnia cannot be ruled out.
Kazak, A. E., & Nachman, G. S. (1991). Family research on childhood chronic illness:
Pediatric oncology as an example. Journal of Family Psychology, 4(4), 462-483.
This article reviews select literature on adjustment to childhood cancer and organizes
them into a social ecological systemic framework that includes the ill child, family
subsystems, and larger systems. The ill child, siblings, parents, families, social support
networks, educational systems, policy and societal attitudes, and directions for future research
constitute specific subsections of the paper.
Klopfenstein, K. J., Hutchinson, C., Clark, C., Young, D., & Ruymann, F. B. (2001).
Variables influencing end-of-life care in children and adolescents with cancer. Journal
of Pediatric Hematology/Oncology, 23(8), 481-486.
The idea for this study stemmed from the lack of information available regarding
variables that influence end-of-life decisions for children and adolescents with cancer. A
literature review is somewhat lacking in the introduction of the paper, however the authors
provide some statistics in the first paragraph that justifies this research. The literature review
is more comprehensive in the discussion section, as the authors compare their findings to
those in previous studies.
A list was generated from a tumor registry at Children’s Hospital in Columbus, Ohio,
that included patients with malignancies who died during the period from March 1993 to
March 1997. While 146 patients were identified, only 95 were evaluated. Reasons for
excluding the 51 individuals were given. Demographic information was recorded and is
provided in a table. Details of diagnosis were recorded, as well as circumstances at the time
of death. Cause of death was documented as progressive disease or therapy-related. The
presence of a DNR order, length of time it was in effect, place of death, whether life
sustaining treatments were withdrawn, and whether an autopsy was performed was recorded.
These DNR related variables were compared in patients who had progressive disease versus
those dying of complications. Statistical analysis information was described briefly following
the sample information and methods.
The results section was lengthy and included several tables including one for patient
diagnoses, another with causes of therapy-related deaths, variables relating to death, support,
and treatment, and significant interactions between the disease-related death and other
variables. A nice graph is also provided that details the age distribution of disease-related
deaths and therapy-related deaths.
In essence, there were fewer deaths in children younger than age one and older than
age 15. The two most common malignancies in childhood were found to be leukemia and
brain tumors. A DNR was more likely to be in effect for patients dying of progressive
disease. This group of patients also had shorter hospital stays and more occurrences of dying
at home than therapy-related deaths. Sixty percent of the patients died in the hospital, but
17
only 10.5% of patients were receiving maximal aggressive support at the time of death.
Different patterns of end-of-life care were identified based on whether the patient had
leukemia or a solid tumor and details regarding this finding are revealed. Variables
surrounding the DNR order are discussed. Recommending further improvements for end-oflife care, the authors concluded by stating that documenting care that is implemented for
these patients now is crucial in order to track inefficiencies and make progress.
Knafl, K. A., & Deatrick, J. A. (1986). How families manage chronic conditions: An
analysis of the concept of normalization. Research in Nursing & Health, 9, 215-222.
In recognition that numerous authors employ the term “normalization” in
conceptualizing how families deal with loved ones chronic conditions, the authors performed
a concept analysis of the term. Knafl and Deatrick asserted that a lack of conceptual clarity
impedes research development and advances. The steps that were undertaken in pursuit of the
concept analysis are clearly outlined and explained. Following their review, the agreed upon
criteria for defining the concept of normalization were presented. Normalization was
compared and contrasted with two related, yet distinguishable terms, disassociation and
denial. Case examples are provided to highlight the differences between these mechanisms.
Several directions for future research were provided. In conclusion, the authors’ make a nice
contribution to the literature by extending the boundaries of knowledge on the topic of
normalization.
Koenig, H. G. (2002). An 83-year-old woman with chronic illness and strong religious
beliefs. The Journal of the American Medical Association, 288(4), 487-493.
This report presents compelling evidence for the use of prayer in coping with chronic
illness. Mrs. A is an 83-year-old woman with multiple medical problems. Although she has
received numerous medical treatments, she believes that her faith offers her the most help for
coping. Her medical diagnoses are described in addition to previous treatments she has had.
Dr. M. is her primary care physician and describes Mrs. A. as resilient in that “..she has
continued to live with a chronic, progressive, and debilitating illness and has done so with
incredible spirit…” Dr. M. questions the extent to which she should ask Mrs. A about her
beliefs and whether she should incorporate her spirituality as part of her treatment plan. The
author of the paper, Dr. Koenig, is consulted by Dr. M. regarding these issues. Dr. Koenig
reports that, to date, at least 60 studies examined the role of religion in various medical
conditions with the majority finding high rates of religious coping. Results were highlighted
from a study conducted by Dr. Koenig and a team of investigators who explored religious
coping in 850 consecutively admitted hospitalized patients to determine whether those
depending on religion coped better than those handling stress in other ways. Those depending
on religion coped better independent of demographic characteristics, social support,
economic resources, psychiatric history, and physical health status. A significant inverse
correlation was also found between religious coping and depressive symptoms. Another
study investigated whether religious attitudes were related to speed of recovery from
depression. Out of about 30 baseline characteristics, intrinsic religiosity was one of five
independent predictors of speed of remission. Furthermore, Dr. Koenig reported on a research
review that identified 478 out of 724 (66%) quantitative studies that found a statistically
18
significant relationship between religious involvement and better mental health, greater social
support, or less substance abuse.
Mechanisms for the ways in which religion facilitates coping are presented. Aside
from religion providing hope, the author describes how religious beliefs give patients a sense
of control which can moderate a vicious cycle of anxiety and depression. The act of attending
church is also presented as a socialization opportunity. Promoting spirituality is addressed as
a controversial topic. Taking a spiritual history is apparently well received by most patients,
however doctors should err on the side of caution due to the personal nature of religion. A
couple of studies were highlighted that address whether religious beliefs influence medical
decisions if the patient becomes terminally ill and whether religious beliefs might conflict
with medical care. Dr. Koenig included a brief discussion surrounding the boundaries
between responsibilities of the physician and those of a chaplain. The article concludes with a
question and answer excerpt between Dr. Koenig and various physicians.
This paper examines what could be an essential component of coping with chronic
illnesses for some patients. It certainly provides enough evidence to make the most dubious
reader pursue further research in this realm.
Kolsteren, M. M. P., Koopman, H. M., Schalekamp, G., & Mearin, M. L. (2001).
Health-related quality of life in children with celiac disease. The Journal of Pediatrics,
138(4), 593-595.
Celiac disease (CD) was defined as a chronic intolerance to gluten leading to villous
atrophy of the small bowel. The authors effectively defined quality of life in the introductory
paragraph, however their aim was to assess health-related quality of life of Dutch children
and adolescents with CD which could potentially be defined differently from standard quality
of life. No literature review was included. The Dutch Celiac Patients Society invited 317
children aged 8 to 16 years and their parents to participate. A response rate of 64% (202) was
obtained, yet CD was only confirmed in 133 of these children. No speculations were made
regarding differences between responders and non-respondents. Two generic and one diseasespecific questionnaire were employed. The TNO-AZL Children’s QOL questionnaire was a
generic instrument consisting of one form for children and another for parents. It contains
seven scales including physical complaints, motor functioning, autonomy, cognitive
functioning, social functioning, positive emotions, and negative emotions, scored from 0 to
16 with higher scores representing higher QOL. The TACQOL-COE-DIET is a treatment
scale specific to CD assessing the influence of consuming a gluten-free diet. The second
generic instrument, Dutch Children TNO-AZL QOL Questionnaire assesses the influence of
the disease on daily activities in four domains: emotional, social, familiar, and physical.
Sample questionnaire questions were not provided.
Analyses were run by means of SPSS for Windows version 6.1. Specific calculations
that were made were noted. Findings indicated that the HRQOL of children with CD is
similar to that of the children in the general population. Slight differences between the
children and adolescent groups as compared to the reference sample were reported. Overall,
the children and adolescents with CD and their parents reported similar answers on each
HRQOL scale. At individual levels, however, the adolescents illustrated large differences
when compared to their parents. The authors concluded that despite small differences in the
QoL of children with CD as compared to the general population, strict dietary adherence is
19
essential. The importance of screening for CD is addressed as a means of being proactive and
avoiding potential later complications of CD including anemia, infertility, osteoporosis, and
cancer. Directions for future research were not included.
Laakso, H. & Paunonen-Illmonen, M. (2001). Mothers’ grief following the death of a
child. Journal of Advanced Nursing, 36(1), 69-77.
Employing both qualitative and quantitative methods, the purpose of this article was
to analyze mothers’ grief and coping following the death of a child under age seven. Based on
the notion that caring for a dying child is among the most challenging aspects in nursing, 91
mothers completed a questionnaire designed to elicit information regarding the manifestation
of grief, duration of grief, description of coping with grief, and the meaning of grief in the
mothers’ lives. Spinoza’s (1989) definition of grief is provided and employed. Followed by
the survey, fifty-two of these mothers volunteered to be interviewed. Information regarding
why the rest of the mothers were not willing to be interviewed was not provided. Interviews
were semi-structured and interview themes were described in the article. The authors took the
time to denote the various locations and completion times for interviews. Demographic
information was described. Laakso and Paunonen-Ilmonen placed a strong emphasis on
ethical considerations when undertaking a study of this nature. They noted that a local Ethics
Committee approved the research plan. Not only did they justify the survey and interview as
data collection methods, but they cited references that support their choices. Details as to who
conducted the interviews, however, were excluded.
Transcriptions of interview tapes, coupled with analysis of the questionnaires, yielded
the following results. Mothers’ typically responded with positive feedback regarding the
child’s care in the hospital, but were not satisfied with they way they were treated while
caring for their children. Feelings of grief included physical, psychological, and social aspects
which varied in duration depending on the particular stage of grief in which the mother was
submerged. Resuming work, reading, writing about feelings and experiences, and renewed
interest in old hobbies were among the ways the mothers’ reported managing grief.
Remembering the child was at the core in grief work. Spousal support was perceived as
important in coping with grief because mothers had a greater need to talk, review, and
remember the event than fathers. Mothers were apparently more willing than fathers to attend
grief support groups, yet this is a bold conclusion to draw considering it is based on mothers’
reports. Perhaps fathers’ reports would have demonstrated otherwise. Mothers’ stated that the
child’s death had both positive and negative effects. The child’s death elicited greater
appreciation of life, a greater effort to deepen relationships with their own parents, and a
disappearance of fear of death. On the contrary, negative effects were demonstrated by
intensification of fear, bitterness, and a loss of excitement for living.
An operational model is provided which highlights potential improvements for
nursing staff when providing support to grieving mothers. Reliability issues in the research
design are addressed extensively, followed by the suggestion that development of enhanced
interactive skills and meeting the patient’s individual needs would improve the quality of
care.
20
Lipman, T. H. (2001). Hospitalized children with chronic illness: Parental caregiving
needs and valuing parental expertise. MCN, The American Journal of Maternal/Child
Nursing, 26(6), 344.
This comment by the author was in response to an article published by K. Balling and
M. McCubbin in 2001 in the Journal of Pediatric Nursing (vol. 16, 110-119). The study
apparently investigated the extent to which parents’ desired participation in the care of their
hospitalized children, as well as to determine how parents perceived their expertise to be
valued by healthcare professionals. While the details of the study are lacking since they are
available elsewhere, Lipman obviously wants to emphasize the importance of the study’s
results. Parent caregivers of chronically ill children were surveyed via two questionnaires.
Parents expressed the desire for participation and control of their child’s care, especially
regarding the domains of information sharing and technical care. Although physicians and
nurses were perceived by parents to value parental expertise, residents and medial students
were not. In addition, parents felt that nurses were too busy in the hospital and consequently
wanted their children cared for at home. The author stressed the importance of nurses’
potential ability to educate healthcare team members about facilitating parental involvement.
She concludes with a powerful message that parents are, in essence, essential members of the
healthcare team.
Mattsson, A., & Agle, D. P. (1972). Group therapy with parents of hemophiliacs.
Journal of the American Academy of Child Psychiatry, 11(3), 558-571.
Recognizing that the family plays a critical role in the adjustment of a child with
chronic illness, the authors felt that promoting group therapy for parents of hemophiliacs
would prove to be helpful and supportive. Their goals included parents’ understanding and
dominance of emotional stress related to their sons’ disease and gaining information about
common methods of adaptation used by parents to cope. Based on the notion that healthcare
providers’ knowledge regarding parental adaptation to their child’s chronic illness is
insufficient, the authors felt that observing a parent group would provide this information.
The sample of volunteer parents consisted of four married couples and two mothers
with hemophiliac sons, ages 3 to 19. The sample was clearly not representative of the
hemophilia parent population, as this group of parents were of middle SES and not
necessarily in need of assistance. The group was held for a duration of 25 weeks, lasting 1.5
hours each session. Two additional two-year follow-up groups were held, as well as several
individual interviews.
The authors chose to reveal the parents’ adaptation methods by fitting their
observations into the psychological defense mechanism categories, namely, denial,
rationalization, intellectualization, reaction formation, and identification. Although each
mechanism was defined prior to presenting the way in which parents employed the
mechanism, it is questionable whether each parental method of adaptation actually
corresponds to these mechanisms. Group sessions revealed parents’ painful feelings of
isolation, fears, guilt, and self-blame. Many admitted being overprotective and confused
about their child’s future. Referring to Yalom’s curative factors in group therapy, the authors
found a cathartic effect of sharing hardships, and instillation of hope for becoming more
patient and realistic in their expectations for the child’s future. The group resulted in several
parents gaining insight into their adaptive and maladaptive use of common psychological
21
defenses. Criticism and hostility toward the clinicians were expressed. A two year follow-up
illustrated continued improvement in parents’ self-confidence. The discussion section began
with the authors’ purpose clearly stated. This would have been helpful to state in the
introduction. In essence, the authors concluded that group therapy is an effective method for
promoting appropriate child-rearing practices by parents of chronically ill children.
Meuleners, L. B., Binns, C. W., Lee, A. H., & Lower, A. (2002). Perceptions of the
quality of life for the adolescent with a chronic illness by teachers, parents and health
professionals: a Delphi study. Child: Care, Health and Development, 28(5), 341-349.
Due to the varying domains within which parents, teachers, and health professionals
interact with a chronically ill child, these authors sought a consensus within these groups in
individuals regarding their different perceptions of different aspects of QoL for chronically ill
adolescents. Furthermore, this research aimed to report on similiarities and differences
between the groups.
The Delphi technique was used which takes place in a series of rounds and has three
features: anonymity, controlled feedback and statistical group response. Panels of about 25
teachers, parents, and healthcare professionals were developed. They were asked to rank their
perception of importance for 16 pre-selected items regarding the QoL of chronically ill
adolescents. Round two of the Delphi procedure consisted of prioritizing items within the
domains arranged from results of round one: "extremely important items", "very important
items", and "important items.” Each panel, therefore, was mailed a different survey based on
that panels' answers from round one. Round three required participants to re-order rankings in
terms of importance. Ranks were calculated using the mean score obtained from the second
questionnaire.
Findings from this exploratory research were vast. Only the panel of teachers did not
reach consensus on the prioritization of very important items. Independence was rated as very
important and highly prioritized by all three panels, as well as friendships with peers and
family relationships. Physical health was rated as extremely important to health professionals
and parents, but not teachers. Parents were the only panel to rate management and decision
making regarding the illness as extremely important. Teachers perceived the development of
future plans as extremely important, reflecting their role in adolescents' lives. Limitations of
the study were discussed. Meuleners and colleagues asserted that this study drew various
individuals' attention to many aspects of chronically ill adolescents' lives and therefore should
improve the overall care and support received by these individuals.
Meyer, E. C., Burns, J. P., Griffith, J. L., & Truog, R. D. (2002). Parental perspectives
on end-of-life care in the pediatric intensive care unit. Critical Care Medicine, 30(1),
226-231.
Designed to obtain parents’ perspectives of children who died after withdrawal of life
support, a self-administered questionnaire was administered. Acknowledging the deficit
proposed in the literature regarding meeting the needs of dying children and their families,
the authors formulated the Parental Perspectives Questionnaire. The questionnaire consists of
28 Likert format questions, in addition to five open ended questions concerning parental
ratings in the areas of quality of communication, adequacy of pain management, end-of-life
decision making, and the social support network.
22
Results showed that while 87% of parents felt well informed about their child’s
condition, a mere 48% felt well informed regarding whom they could talk to about their
questions. Slightly more than half of the parents interviewed agreed that their child was
comfortable in his or her final days, but twenty percent disagreed. A large majority (81%) of
the parents reported that the amount of pain medication administered was adequate at the end
of life.
In response to questions regarding factors that parents reported as important in
guiding end-of-life decisions, there was quite a bit of variance. Eighty two percent of parents
reported that the child’s quality of life was very important, 78% said that the child’s chance
of getting better was very important, and 76% said that the child’s pain or discomfort was
very important. Not one parent reported financial costs as important in the decision-making
process. Nurses were reported most frequently to be at the child’s bedside at the time of
death. Family members were next, followed by physicians, friends, and other staff.
Interestingly, clinicians who were usually previously unknown to the family became a great
source of support for the families. Drawing from their study, the authors concluded by
highlighting priorities for pediatric end-of-life care.
Middlewood, S., Gardner, G., & Gardner, A. (2001). Dying in hospital: Medical failure
of natural outcome? Journal of Pain and Symptom Management, 22(6), 1035-1041.
A retrospective research design was employed to investigate the patterns of medical
and nursing practice in the care of patients dying from cancer in Canberra Hospital, located in
Australia. This study was a replication of a study conducted by Fins, Miller, Acres, et al.,
(1999) in the United States. The chart abstraction tool that was validated in Fins et al. study
was modified slightly due to the fact that advance directives are not legally binding in the
Australian Capital Territory (ACT) and thus very few people use this legislation. Items that
survey advance directives and health care proxies were excluded. Two other subtle changes
were also described. Medical records of one hundred patients who died as a result of an
oncological or a hematological malignancy before August 1999, were abstracted. A modified
chart abstraction tool examined 60 items of information from the medical records including
demographics, diagnoses, reasons for admission, occurrence and timing of do not resuscitate
(DNR) orders, whether the patient was considered dying, the documentation of palliative care
goals, the withdrawal or non-withdrawal of life sustaining treatment, and the use of
diagnostic tests.
The methods section of this article was quite thorough. Not only were changes noted
that were made to the chart abstraction tool, but the authors’ indicated that permission was
obtained to modify the instrument and a preliminary pilot process was described to ensure
validity of the altered items and rater reliability of the collector.
Patient characteristics are described in table form. Data were analyzed using SPSS for
Windows. Both quantitative and qualitative data were used to deduce findings. Consistent
with the theme in much of the North American literature, the study revealed an inefficient
transition from acute to palliative care in dying patients. Middlewood and colleagues
compared their findings to those of previous studies. Analysis illustrated that many patients
were in the end-of-life stage, but were still receiving invasive tests and treatment to sustain
life. Curative interventions were documented to have been implemented in many patients for
whom DNR orders, recognition of dying, and palliative care goals were found in their
23
medical records. The authors suggested that many health care systems are dominated by an
imperative which requires adherence toward implementing curative interventions. The results
also indicated an ambiguous understanding of patients’ prognosis by medical staff, as
illustrated by a short time interval between documentation that recognizes dying and the
actual event of death. Implications for practice are clearly spelled out for the reader.
Middlewood and colleagues acknowledge the dependence of a retrospective study on
the quality of notes in the medical records. Nonetheless, they contend that there is a lack of
recognition in the role of palliative care in acute hospital environments. It is deemed crucial
that the integration of palliative care take place to assist in the transition of curative treatment
to enhancing the quality of life.
Miettinen, T., Alaviuhkola, H., & Pietila, A. (2001). The contribution of “good”
palliative care to quality of life in dying patients: Family members’ perceptions. Journal
of Family Nursing, 7(3), 261-280.
Justification for this study is based on the authors’ belief that quality care for dying
patients consists not only of alleviating ill-being, but also improving quality of life (QoL) by
increasing positive aspects of the patient’s life. QoL of the patient is highlighted as a critical
outcome of effective care. The main factors that affect the outcome, according to this article,
are treatment technology, treatment atmosphere, and factors that are unique to the patient,
including disease, mental, emotional, and social factors. The variability in defining QoL is
discussed. Regardless of the lack of agreed upon definition, Miettinen and colleagues agree
with Cella’s (1992) idea that subjectivity and multidimensionality are two fundamental
components of QoL. This study evolved out of interest in exploring dying patients’ family
members’ perceptions of what constitutes good palliative care and QoL for terminally ill
individuals.
The researchers employed phenomenology as their research method of choice. For
those unfamiliar with this tactic, a brief description is provided. A small, purposive sample
(n=9) was comprised of family members of patients who had died about one year earlier. The
sample was heterogeneous in relation to the deceased patients. This could be either beneficial
or problematic due to the altered perceptions that can stem from varying relationships with a
patient. Each informant was interviewed in an unstructured fashion by one of the researchers
at their home. Interviews were tape recorded and lasted about 1.5 hours. Categories that
described the family members’ conceptions of elements needed for good quality of life were
abstracted. Namely, way of living, dignity, and professional palliative care were the
categories described. Components of way of living are revealed. Dignity was described as
almost unanimous to autonomy. In otherwords, it was important to patients to be able to
maintain control over some aspects of their lives. Professional palliative care, category three,
has three subcategories that are illustrated in a chart. Briefly, conceptions of nursing care
contributed to this category as well as continuity in care, nursing knowledge and skills, pain
management, and fulfilling wishes among others.
The authors acknowledged that employing a phenomenographic approach limits the
generalizability of a study. They concluded that their results illustrate the essential role that
good palliative care plays in increasing terminally ill patients’ quality of life. The importance
of eliciting caregiver experience is highlighted, but it might be beneficial to utilize a method
other than that of phenomenography with a larger sample size.
24
Mullins, L. L., Chaney, J. M., Kiser, K. L., Nielson, B. A., & Pace, T. M. (1998). The
influence of depressive symptomatology and pediatric chronic illness on the social
responses of graduate students in education. Children’s Health Care, 27(3), 205-214.
Based on the interpersonal theory of depression described by Coyne (1976),
depressive symptoms can be maintained by the social responses of others. The authors’
reviewed a slue of studies that provided evidence for this model, including one that
confirmed that negative social responses to students manifesting depressive symptomatology
were elicited by grade school teachers. With concern that teachers might unknowingly
reinforce the depressive symptoms, an experimental design was employed to test whether
graduate students enrolled in educational courses would respond differently to three groups:
non-depressed children, depressed children with a chronic illness, and depressed children
without a chronic illness.
Students were not randomly selected, but 138 students from a university were
randomly assigned to view one of two films in which a female child actress was portrayed as
either depressed or non-depressed. Thorough demographic information on participants is
provided. Prior to viewing, the students randomly received either no background information
on the actress or one of three descriptions of the child’s illness status (e.g. diabetes, asthma,
or cancer). Following the video the students completed measures of personal rejection and
interpersonal attraction, both of which were Likert-style scales that were cited to have been
used in previous research. An example of an item on each scale is presented. Participants
completed the Beck Depression Inventory (BDI) to assess their individual level of depressive
symptomatology. Reliability and validity data of the BDI is provided, as well as a reference.
Group participants did not differ significantly in terms of demographic data or
specialized training. Statistical analyses were run, including MANOVA and MANCOVA.
Descriptive statistics are provided in a table. Contrary to the authors’ hypothesis, the graduate
students did not personally reject the depressed child, though s/he was rated as less
interpersonally and physically attractive than the child in the non-depressed condition.
Knowledge of the child having a chronic illness did not influence participants’ perceptions,
nor did it attenuate the negative ratings of interpersonal attraction. The authors acknowledged
that using a sample of graduate students in education may have biased their results in that
they are a more culturally sensitive group, but a number of possible explanations for their
findings are discussed. The authors suggested that this contradictory finding warrants further
research exploring whether advanced education moderates negative social responding.
Implications for practice are provided by means of intervention strategies for teachers,
clinicians, and parents. This article could be incorporated as part of mandatory teacher
training, as it could heighten their awareness regarding unintentional negative reactions to
students displaying depressive symptomatology.
Noll, R. B., Gartstein, M. A., Vannatta, K., Correll, J., Bukowski, W. M., & Davies, W.
H. (1999). Social, emotional, and behavioral functioning of children with cancer. The
American Academy of Pediatrics, 103(1), 71-78.
This research was designed to overcome limitations of previous work that
investigated social adjustment with peers and emotional well-being of youngsters with cancer
that are receiving chemotherapy. The social, emotional, and behavioral quality of life for
25
children currently undergoing chemotherapy from peers, teachers, parents, and the child’s
perspectives was the aim of this investigation, however no definition of quality of life was
provided. A literature review was severely lacking.
Children with cancer that were identified through a tumor registry yielded a sample of
78 that met eligible criteria. Two phases of the study took place. Phase one was conducted in
the classroom where data on peer relationships were obtained and potential peer comparisons
were identified. Phase two consisted of home visits to the cancer patients and their
comparison peers. Each ill child was matched to a classmate who was the same race, gender,
and closest in date of birth. Each family of the comparison children were screened to ensure
no severe chronic illness was evident, however the authors did not define what would
constitute a “severe” chronic illness.
Behavioral reputation and social acceptance data were collected in the child’s regular
classroom. Details of the administration procedures, as well as the questionnaires, were
provided. Home visits were made to each child with cancer and each comparison child to
assess emotional well-being and behavior. All objective measures used were widely
available, reliable, and valid. A projective measure was included to permit for more accurate
answers from the children that are less influenced by social desirability.
Information regarding statistical analyses is sufficient. Demographic information on
the families and youngsters with cancer as well as the comparison peers is displayed in a
table. Results showed that children with cancer were functioning better socially and similarly
emotionally to the matched controls. Children with cancer differed in that they reported lower
athletic self-concept. The projective measure did not imply that children with cancer repress
their true internal experience of living with cancer. The discussion section is thorough and
the authors begin by reminding the reader of the justification for this study. The ways in
which this study surpassed previous limitations in this type of research were explicitly
described. Explanations for the findings are explored. The results are presented in light of the
limitations. Ultimately, the authors stress that these results do not support disability/stress
models of childhood chronic illness.
Perrin, E. C., Ayoub, C. C., & Willett, J. B. (1993). In the eyes of the beholder: Family
and maternal influences on perceptions of adjustment of children with a chronic illness.
Developmental and Behavioral Pediatrics, 14(2), 94-105.
Based on a theoretical model that asserts child, illness, and family characteristics
jointly contribute to the adjustment of a child with chronic illness, this paper focuses on the
contribution of family interactions and resources, and maternal self-esteem, social network,
and health locus of control beliefs to the overall adjustment of children with chronic illness.
The study was designed to overcome previous inadequacies with this type of research. A
definition of psychosocial adjustment was provided. The child’s adjustment was rated
independently by the child, a parent, and a teacher. These measures were analyzed separately.
In addition, the sample was comprised of healthy children and children with one of several
specific chronic illnesses across a wide range of severity. There were an equal number of
males and females in each group. Children were of a normal range of intelligence and were
distributed equally among a range of age and socioeconomic status.
The sample of 187 children was obtained through solicitation from urban, suburban,
and rural areas of middle Tennessee that varied in socioeconomic status. Inclusion criteria are
26
described. The sample was broken into five “health status” groups by diagnoses. Several
measures were completed by the three observers to measure each child’s psychosocial
adjustment which are conveniently located in a table. Two of the measures used have
apparently been problematic in samples with children with chronic illness (Social
Competence Scale and the Social Competence Scale of the Youth Self Report), despite
sufficient reliability and validity findings. This leads the reader to question whether a
different assessment tool would have been more appropriate. Furthermore, a Health
Resources Inventory was to be completed by a teacher. This measure was modified to create a
parent assessment. Adaptations were made to refer to behaviors at home. This could change
reliability and validity estimates. No examples of changes were provided.
Statistical analysis included a principal components analysis followed by
establishment of predictors of family functioning. Predictor measures are listed in table.
Results indicated that depending on the identity of the observer, children’s adjustment
depended on their health status, verbal intelligence, gender, family environment, and
mother’s health locus of control. This led to multiple regression analyses. Fitted regression
models predicting perceptions of child adjustment by health status and family characteristics
are outlined clearly in a table. In general, results indicated that most children with chronic
illness function well. A closer look, however, reveals that healthy children are perceived by
all three observers as being somewhat better adjusted than children with a chronic illness.
There were differences in adjustment depending on the type of illness the child had, as well
as the observer assessing the adjustment. In addition, family interpersonal environment,
maternal health locus of control beliefs, and the child’s gender and intelligence were
highlighted as potential risk or resistance factors when coupled with the child’s illness.
Quality of family life was noted to have a considerable impact on children’s psychosocial
adjustment. Interestingly, observers rated females as better adjusted than males, regardless of
illness status. Findings by diagnoses as well as rater groups are discussed in detail.
The authors concluded by asserting that perceptions of children’s behavior and
adjustment vary depending on the observer. It is not a matter of whether an observer is right
or wrong, however, but rather differences in children’s behavior in various settings as well as
observers’ interpretations of the behavior. Therefore, it is imperative to solicit multiple
observers’ perceptions of a child’s adjustment in order to gain a rich understanding of the
complex influences of family and illness characteristics.
Phipps, S., & Steele, R. (2002). Repressive adaptive style in children with chronic
illness. Psychosomatic Medicine, 64(1), 34-42.
The validity of self-report measures used in pediatric and clinical child psychology
has been questioned. Some research ascertains that self report measures can accurately
pinpoint the distressed range of individuals but are not specific enough to distinguish
between people who are truly healthy and those who are distressed but do not report it.
Studies are highlighted that have employed self-report measures and reported a lack of or
minimal level of distress, depression, anxiety, self-esteem, behavioral problems, general
psychopathology, and somatic distress experienced by children with cancer. To test the
potential bias that is inherent in self-report measures, the authors investigated whether a high
prevalence of repressive adaptation is unique to children with cancer or may be found in
27
other children with serious chronic illness. In addition, a measure of anger expression was
included to determine whether this repressive adaptation encompassed repressed anger. It is
questionable as to whether a conceptual definition of adaptive style should have been
introduced. One could argue that a working definition of “adaptive style” is essential
considering it is a construct being measured.
Children with recently diagnosed cancer were compared to children with a diagnosis
of diabetes mellitus (DM), cystic fibrosis (CF), juvenile rheumatoid disorders (JRD), and a
group of healthy controls. The children with cancer are apparently going to be followed
longitudinally and thus this article reports the baseline findings between all groups.
Structuring this longitudinally is an excellent idea, for then differences in adaptive style can
be explored to determine whether it is an acute reaction to diagnosis, or a chronic adaptation.
A control group consisting of healthy school children in grades two through twelve
was recruited from the same geographic area as the cancer and chronically ill group. Children
with cancer were recruited from a major pediatric oncology center, and the chronically ill
group was recruited from specialty outpatient clinics at a major children’s teaching hospital.
Demographic information on participants is presented in a table. Measures utilized included
the Children's Social Desirability Questionnaire (CSD), the State-Trait Anxiety Inventory for
Children (STAIC), and the Anger Expression Scale for Children (AESC). Psychometric
properties of these instruments were included, as well as references for additional
information.
An extensive results section is provided which details the statistical analyses run.
Analyses revealed that children with cancer incorporate higher levels of repressive adaptive
style than healthy controls. However repressive adaptation is not unique only to children with
cancer, as repressive behavior was reflected in a slightly higher proportion of children with
chronic illness. Repressors reported less anger expression than other adaptive style groups,
which suggests that the repressors are unlikely to look distressed on any self-report
instruments according to the authors. This study highlights the need for researchers to further
assess mood disturbance if self-report measures reflect a lack of distress. It will take
additional investigation to determine whether reports of fewer distress symptoms reflect a
healthy adaptation or a maladaptation. The major limitation of the study is addressed, which
concerns the absence of a good demographic match between groups.
Rabbett, H., Elbadri, A., Thwaites, R., Northover, H., Dady, I., Firth, D., Hillier, V. F.,
Miller, V., & Thomas, A. G. (1996). Quality of life in children with crohn’s disease.
Journal of Pediatric Gastroenterology and Nutrition, 23(5), 528-533.
Examining the health-related quality of life (HRQOL) of children with Crohn’s
disease (CD) is important given that CD is a potentially disabling condition that can disrupt
family and school life, induce financial stress, and lead to social isolation. This ten week
cross sectional, pilot study examined the QOL of 16 children with CD, ages 8-17.
Acknowledging the difficulty in devising a universally accepted definition of quality of life,
Rabbett and colleagues at least attempt to explain their understanding of the concept. The
children were randomly selected and administered an 88 item questionnaire concerning
physical symptoms and status, as well as questions regarding their social functioning,
emotions, and future plans. Simply stating that a questionnaire was “devised” was quite
vague and necessitates sample questions for the reader, yet none were included. Parents were
28
given a separate questionnaire to elicit their opinions on their child’s disease and its effects,
in addition to the Rutter A Questionnaire. A reference is provided for the Rutter A
Questionnaire, but no specific reliability and validity properties were offered. This
standardized survey apparently assesses parent thoughts and worries.
The results section was not presented in cohesive paragraphs, but rather just sentence
after sentence of descriptive percentages. Nonetheless, parents’ perceptions of the severity of
their children’s symptoms were significantly correlated with their children’s views regarding
rectal bleeding, poor growth, lack of energy, and poor appetite. Teasing/bullying, worsening
of the disease, education, and marriage prospects were more worrisome topics for parents
than the children. This disease was found to be detrimental to education due to the extensive
number of absences the children experience. Children reported being distracted while
attempting to complete schoolwork. With a lack of energy, these patients reported the
inability to participate in sports. Worry, anger, and frustration were reported by parents and
children, but affected parents more. Variable degrees of sleep and emotional disturbance were
identified in the children. Those who took steroids were found to experience a greater number
of depressive symptoms than those not on steroids. Problems for parents of these children
were primarily the child’s behavior, disruption of work, and the effect on other children.
New literature is reviewed in the discussion that would have been beneficial in the
introduction. Elements of potential bias are highlighted and implications for clinicians and
future research are mentioned.
Radina, M. E., & Armer, J. M. (2001). Post-breast cancer lymphedema and the family:
A qualitative investigation of families coping with chronic illness. Journal of Family
Nursing, 7(3), 281-299.
As breast cancer survivor rates increase, there are a large number of women dealing
with quality of life issues related to the effects of treatments. Removal of and/or irradiation of
the axillary lymph nodes is one such treatment that can elicit a painful, chronic after effect
called lymphedema. Lymphedema occurs when the lymph nodes under the arm are removed
or damaged by surgery, radiation, or infection. Fluid accumulates along the length of the arm
and this condition cannot be cured. The purpose of this study was to explore how family
functioning is altered by the onset of lymphedema. As women often perform several roles in
maintaining family functioning, including caregiver, housekeeper, and cook, this illness may
preclude them from completing daily activities.
The Family Adjustment and Adaptation Response (FAAR) Model was used as a
foundation for the study. The FAAR Model suggests that as families encounter new stressors,
the entire family system works to achieve homeostasis. Hence, the authors sought to examine
specifically the changes in the demands on the family and family relationships when
lymphedema is present.
Ethnography was employed for data collection. The sample was recruited from a
variety of settings and were members of a newly forming lymphedema support group in
central Missouri. Preliminary interviews were conducted with some of the women, although
the authors failed to disclose the number. The primary researcher’s impressions were
incorporated into field notes. There was no mention of ensuring agreement between multiple
raters regarding impressions from these interviews. Follow-up interviews were conducted and
29
audiotaped with a mere six women, some of whom were apparently previously interviewed.
The primary researcher observed the lymphedema support group on three occasions.
Detailed field notes were apparently written for each follow-up interview as well as for the
support groups. The coding technique that was employed is described.
The findings surrounded two issues. First of all, many women modified the way tasks
would get accomplished by either changing the way in which the task was done or recruiting
help from others. The other finding, which seemed obvious, was that due to the impact that
lymphedema has on daily tasks, many women and families must cope with changes brought
on by lymphedema in relation to family functioning and family relationships. Case examples
are incorporated but offer too much detail to illustrate what seems like simplistic
observations.
Implications for practitioners are included, however nothing profound is provided.
The authors recommend that practitioners encourage flexibility in task modification in these
women, as well as encouraging families to maintain a balance between usual family needs
and the needs of the illness. These are quite broad suggestions. Concrete ways in which a
family could be assisted to maintain homeostasis would have been beneficial. If this is
beyond the scope of this study it could have been recommended for future research, however
no recommendations in this realm were given.
Ratcliffe, C. E., Harrigan, R. C., Haley, J., Tse, A., & Olson, T. (2002). Stress in families
with medically fragile children. Issues in Comprehensive Pediatric Nursing, 25, 167-188.
Medically fragile children have been defined as technologically dependent children
who require sustained care to avoid death, often requiring ventilation, oxygen, enteral
feeding, tracheostomy care, and intravenous therapy. As financial pressures on health care
systems elevate, medically fragile children are increasingly cared for at home. The authors
provide an analysis of the literature related to the stress experienced by families who care for
medically fragile children. With a sample of 29 articles detected between January 1990 and
May 2000, a reader-friendly table was designed that includes the author/date, purpose,
sample, methods, and findings of each article. Considering the fact that the family, child, care
providers, and health care system are all domains with a unique role in the sustenance of the
medically ill child, the authors designed the “Family stress/task matrix”. Although the
authors note that comparative analysis was used to generate themes, few details are presented
that describe the process of coding themes, affirming other research team member and parent
themes, etc. The resulting matrix integrates the core themes found throughout their review
and the applications of these themes to each of the four domains mentioned above. The core
themes identified in the review include role conflict, financial burden, care burden, and
independence/isolation.
Although the health care system is struggling with how to support families in this
situation, the authors assert that it is the family itself who suffers the greatest conflict and
burden. The “Family stress/task matrix” highlights the need for a family centered philosophy
of care, according to Ratcliffe and colleagues. Health care professionals need to assume a
perspective change, recognizing families as partners as opposed to people to manage. Finally,
the authors challenge the health care system to become more flexible and creative. The
conceptual framework of this model can be of use in the assessment and intervention
planning with families of medically fragile children.
30
Rice, R. W., Frone, M. R., & McFarlin, D. B. (1992). Work-nonwork conflict and
perceived quality of life. Journal of Organizational Behavior, 13, 155-168.
The study aims to examine variables that might mediate what research has shown to
be a negative correlation between work-nonwork conflict and overall perceived QOL.
Hypotheses were tested derived from an additive model that proposes perceived quality of
life associated with work, family, community, religion, or leisure domains of life combine
additively to determine the overall quality of life. The sample included 823 respondents taken
from the 1977 Quality of Employment Survey who were at least 18 years old, worked at least
35 hours per week, were married or parents of children under 18, and provided analyzable
scores on all 166 variables included in the analyses. Sociodemographic variables were treated
as covariates and moderators including age, sex, race, education, number of hours worked per
week, type of employment, job tenure, family income, occupational prestige, and family type.
Overall perceived quality of life was measured by a composite global life satisfaction scale
that incorporated three measures: life ratings, satisfaction, and happiness. Perceived quality of
life in specific domains of life was operationalized by measures of satisfaction with job,
family, and leisure. Two forms of work-nonwork conflict were measured, including workfamily and work-leisure.
Results indicated that measures of work-nonwork conflict were negatively related to
overall quality of life, after controlling for the sociodemographic variables. Relationships
between work-nonwork conflict and overall quality of life were fully mediated by domain
quality of life. Work-nonwork conflict had no direct relationship with overall quality of life
in analyses controlling for the effects of domain quality of life. Membership in certain
sociodemographic subgroups did not make these general relationships any weaker or
stronger. The study supported the hypotheses derived from additive models of overall QOL,
adding validation to such models.
Silveira, M. J., DiPiero, A., Gerrity, M. S., & Feudtner, C. (2000). Patients’ knowledge
of options at the end of life: Ignorance in the face of death. JAMA, 284(19), 2483-2488.
This study raises some important issues regarding palliative care. The authors,
suspecting that patients are typically misinformed about terminal care, conducted an
exploration of outpatients’ knowledge surrounding four critical components of end of life
care: refusal and withdrawal of life-saving treatments, physician-assisted suicide, active
euthanasia, and the doctrine of double effect. They were additionally interested in whether
authoring advanced directives, experiencing personal illness, acting as a proxy for health care
decisions, and caring for an ill loved one are associated with better knowledge in end of life
care.
Outpatients were recruited via one of four medicine clinics in Oregon. As patients
checked in for their appointments, they were invited to complete the self-administered survey
that was developed by the first author. The survey had apparently been pilot tested
previously, although there was no mention of the results in this article. The survey consists of
a clinical vignette along with questions regarding the patients’ issues. Conveniently, it is
appended at the end of the paper. The questionnaire also elicited demographic information
from the patients.
31
STATA 6.0 software was used to analyze the data. Of 1000 outpatients invited to
participate, 728 completed the questionnaire. Information regarding declining participation
was not collected. Characteristics of the sample were provided in a table. Prior experience
with illness was common among the sample, with 87% having experienced death or illness of
a loved one. Approximately two-thirds of the sample correctly understood that competent
patients could legally refuse life-sustaining treatment, however subjects had less knowledge
about withdrawal of treatment. A small percentage of respondents (23%) correctly identified
assisted suicide and many individuals seemed to believe that assisted suicide and active
euthanasia are interchangeable terms. Most respondents believed that both assisted suicide
and euthanasia are legal, when, in reality, only assisted suicide is.
Regarding the four personal experience factors that the researchers were concerned
with, only the experience of proxy decision making was independently and significantly
associated with accurate knowledge about options in end of life care. The authors noted that
personal experience with illness and authoring an advanced directive was not significantly
associated with better knowledge about options in end of life care.
While the limitations of the study are highlighted, the fact that many of these patients
are not informed regarding end of life care must not be undermined. Specifically, this study
illustrates that despite having signed an advanced directive, patients are still not well
educated. Reading this makes one re-evaluate their knowledge regarding their own health
care.
Silver, E. J., Bauman, L. J., Coupey, S. M., Doctors, S. R., & Boeck, M. A. (1990). Ego
development and chronic illness in adolescents. Journal of Personality and Social
Psychology, 59(2), 305-310.
Loevinger’s Sentence Completion Test of Ego Development (SCT), used to assess an
individual’s placement along a psychological maturity continuum, was employed in a sample
of 36 teens with chronic illness and 50 teens without chronic illness to determine whether
adolescents with chronic illness were more or less psychologically mature than their healthy
peers. Chronic illness was defined as a serious physical illness that was likely to require
regular and frequent medical intervention for at least 3 years. Most of the ill group had
asthma or diabetes mellitus, but others had chronic inflammatory bowel disease, sickle cell
anemia, systemic lupus erythematosus, hemophilia, or arthritis.
In addition to the SCT, Peabody’s Picture Vocabulary Test-Revised (PPVT-R) and
the Wide Range Achievement Test (WRAT) were administered. Consistent with the
literature, results revealed that background characteristics of teenagers are associated with
their ego development stages. SCT scores were related to age, sex, and either verbal fluency
or IQ. The authors found no relationship, however, between chronic illness and ego
development stage which are apparently contradictory with another study. Silver and
colleagues attributed this difference to potential differences between characteristics of the
adolescents in the two studies. The only circumstance where an effect of illness on ego
development was identified was when the illness was severe and verbal skills were greater.
Further research was deemed necessary to understand and confirm this potential relationship.
32
Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., &
Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family,
physicians, and other care providers. JAMA, 284(19), 2476-2482.
In an effort to depict exactly what is involved in a “good death,” the authors examined
what patients, family members, physicians, and others consider to be important
characteristics of dying “well.” A cross-sectional, stratified random national survey of
seriously ill patients, family members who lost a loved one between six months to one year
earlier, physicians, and other care providers, such as nurses, social workers, and chaplains,
was conducted. Patients were randomly selected from a VA Patient Treatment File database
including a variety of advanced chronic illnesses. Care providers were randomly selected
from membership lists of national professional associations.
Surveys were mailed to 500 subjects in each of the four groups. The survey consisted
of 44 attributes of experience at the end of life which subjects were instructed to rate on a
five-point scale. The survey was developed following previously held focus groups and
interviews with these sample groups in which subjects were asked to define attributes of a
good death. Those results are published elsewhere. The website at which the survey can be
found is listed. Subjects were also presented with the nine most frequently identified items
identified from the focus groups and asked to rank order them from one to nine (least
important). A thorough description of statistical analyses was included. Of 2000 surveys
mailed, 1462 respondents were recruited.
Amongst the four groups, there were domains of strong agreement as well as those of
variation. More than half of the survey items did demonstrate consensus among the four
groups. Many of these items surrounded pain management, while another group of these
endorsed items suggested that subjects want to feel prepared to die. A couple items were
related to achieving a sense of completion of one’s life, while a few others revealed that
subjects want treatment preferences and who is designated as decision making authority in
writing.
The study highlighted the fact that peoples’ preferences regarding dying vary. In
addition, aspects of care that are critical to patients and family members may not be viewed
as crucial to health care providers. For example patients strongly endorsed being mentally
aware which was in contrast to physician responses. Patients highly valued time devoted to
spirituality issues. This was ranked nearly identical in importance for family members.
Interestingly, fewer than half of the patients agreed that dying at home was important. Other
findings are discussed. Limitations include limited generalizability due to the fact that
patients and family members were recruited from VA medical centers. It is clear, however,
that peoples’ opinions differ regarding attributes of a good death. Therefore, physicians must
take into account the patients’ personal needs when instituting end of life care. The authors
suggest that future research should assess differences in opinions of the “other care
providers” group regarding this topic.
Williams, P. (1997). Siblings and pediatric chronic illness: a review of the literature.
International Journal of Nursing Studies, 34(4), 312-323.
Williams provides a great review of over 40 studies published between 1970 and
1995 that identify the extent and nature of risks to siblings of chronically ill children. Her
definition of chronic illness that she employed was included which was helpful because the
33
term “chronic illness” is often defined differently. A table is presented that grouped the
studies according to three outcomes: Increased risk for siblings, no risk to siblings, and
positive and negative outcomes. Additionally, the method used in each study is described,
including the sample size, ages of subjects, data sources, data collection tools, and the use of
a control group. Text follows the table which summarizes the nature of the problems,
outcome measures, and research designs used in the studies.
Williams, P., Lorenzo, F., & Borja, M. (1993). Pediatric chronic illness: Effects on
siblings and mothers. Maternal-Child Nursing Journal, 21(4), 111-121.
The purpose of this descriptive, comparative study was to depict the effects of
pediatric chronic illness on sibling and maternal behaviors. 100 families of children that were
medically diagnosed with cardiac and neurological conditions were included. Mothers
participated in structured interviews during which they were asked for their description of the
siblings’ responses to the child’s illness, including physical and behavioral changes as well as
answering questions regarding household, school, and social activities. The second portion of
the interview was forced-choice format and asked about the mothers’ caretaking activities,
housekeeping activities, provider role-related activities, social activities, and marriage rolerelated activities.
Descriptive analyses showed that changes in roles occurred for both mothers and
siblings at the onset of pediatric chronic illness. Maternal caretaking of well children,
housekeeping, provider role, and social activities decreased significantly, while sibling
household activities increased and social and school activities decreased. Among the two
groups of mothers of children with heart disease and mothers of children with neurological
illness, mothers’ caretaking of well siblings of children with heart disease was significantly
reduced following illness onset to a greater extent than those of mothers of children with
neurologic illness. Furthermore, a gender effect was found among siblings. Specifically,
female siblings were more involved with well-child caregiving than males. This article is a
nice contribution to the understanding about family roles in the context of pediatric chronic
illness.
Williamson, G. M., Walters, A. S., & Shaffer, D. R. (2002). Caregiver models of self and
others, coping, and depression: Predictors of depression in children with chronic pain.
Health Psychology, 21(4), 405-410.
Using a sample of 59 chronically ill children and their maternal caregivers, the
authors tested the hypothesis that when controlling for child reported pain, caregivers with
less positive models of the self and others were expected to be less likely to use approach
coping strategies and more likely to use avoidant coping strategies. Children receiving
outpatient therapy for a painful chronic disorder were interviewed, with their maternal
caregivers taking part in a separate interview.
Noting that the literature rates self-report to be among the best indicators of pain in
children, the authors simply used a line drawing of a "pain thermometer" to assess child
reported pain. Children were asked to fill in the level of mercury corresponding to the pain
34
they normally had. Items from the Children's Depression Inventory (CDI) were used to
measure depression in the children. The Bartholomew and Horowitz (1991) measure of adult
attachment was employed to evaluate the extent to which four attachment characteristics
describe the caregivers. Characteristics included gaining information regarding caregiverreported models of self and others were "secure,” "dismissing,” "preoccupied,” and "fearful.”
Four subscales of the Ways of Coping Checklist were utilized to measure caregiver reported
coping strategies. Depression in the maternal caregivers was assessed via the Center for
Epidemiological Studies Depression Scale.
Analyses revealed that different coping strategies are favored by those who differ in
positivity of their models of self and others. Specifically, avoidant coping was more common
among caregivers with negative models of self and others, while the opposite was true for
those with positive models of self and others. Children of depressed maternal caregivers were
more likely to be depressed. Consistent with attachment theory, the findings indicated that
subjects who viewed themselves favorably were more likely to assume they deserve support
from others and, with a favorable view of others, seek that support.
Williamson and colleagues suggest that the results are generalizable to the general
population, but highlight the need for a replicable study that incorporates a larger sample and
data that does not rely exclusively on self-reports. The article concludes that this study
indicates that an increasing approach coping among caregivers should have a direct effect on
child depression, and decreasing avoidant coping should have an indirect effect on child
depression by reducing caregiver depression.
Wissow, L. S., Hutton, N., & Kass, N. (2001). Preliminary study of a values-history
advance directive interview in a pediatric HIV clinic. Journal of Clinical Ethics, 12,(2),
161-172.
The need for communication between patients, adult and children alike, and their
medical providers about end-of-life has been increasingly documented in the literature.
Wissow and colleagues suggest that more efficient planning for children with serious illness
could take place by collaborating written guidelines, established by parents and children, that
document comprehensive goals for care. Values histories have previously been suitable to
guide medical decisions for adult patients. The history is an advanced directive focused on
the patient’s underlying attitudes either in addition to, or instead of, simply focusing on
desires for forgoing treatments. The authors’ literature search revealed no prior publication
on the creation of an advanced directive for children or adolescents, thus prompting them to
initiate the following study.
In an attempt to conduct a preliminary test of the feasibility of developing advanced
directives based on values histories for medically stable children with HIV, the article
describes the content of ten values-history interviews that were conducted with these
families. Fourteen families were recruited, from which ten agreed to participate. The actual
interview procedure was conducted in such a way to provide the family an opportunity to
teach their primary care provider about their history and beliefs. The foundation for medical
family therapy, which states that coping with and recovery from illness can be helped by
enhancing a sense of agency and communion, guided the interview process. The child
psychiatrist and the child’s regular medical provider co-facilitated the interviews. Topics
discussed included, but were not limited to, disabilities that would make life not worth living,
35
tolerance of pain and risk in hopes of recovery, past experiences with death and chronic
illness, preferences for end-of-life care, preserving life as long as possible, and spirituality.
Analyses of transcribed tapes from the interviews indicated that families often
discussed emotional burdens, coping strategies, support mechanisms, and experiences with
death. Interestingly, technical aspects of care and preferences for specific treatments were
discussed as often. The authors conclude that a values history may be appropriate for families
at various levels of coping. They noted that families would probably be more likely to
participate if the discussion was framed in general terms for making medical decisions and
discussing ongoing coping, as opposed to suggesting it be used for making end-of-life
decisions.
Wolfe, J. Klar, N., Grier, H. E., Duncan, J., Salem-Schatz, S., Emanuel, E. J., & Weeks,
J. C. (2000). Understanding prognosis among parents of children who died of cancer.
Jama, 284(19), 2469-2475.
Acknowledging the fact that anticipation of losing a child may obstruct discussions
about terminal prognosis, and, consequently, affect decision making and initiation of
palliative care, parents of children who died of cancer were surveyed. Wolfe et al. sought to
determine whether there is a delay in time between physicians’ realization of no chance for
cure and parents’ realization. In addition, the study was designed to answer whether the news
of the child’s prognosis affects treatment goals.
Via interviews that were conducted primarily by phone, 103 parents were asked a
variety of questions. The questions were designed to elicit answers regarding the following:
Estimation of timing of their understanding that their child’s condition was fatal; Was there
discussion of this with medical caregivers and, if so, who participated in this discussion;
Understanding of primary goal of cancer-directed therapy at time of diagnosis, during the
period of understanding that the condition was fatal, and current opinion regarding what the
primary goal of cancer-directed therapy should be during end-of-life care; primary goal of
treatment of symptoms during end-of-life care period; quality of care and communication
provided by primary team; involvement of a home care team and/or a psychosocial clinician
during palliative care; and peacefulness of child’s death.
Physicians were asked about children’s likelihood of a cure at diagnosis, primary
treatment goal one month prior to death, and perceived peacefulness at death. Charts of all
eligible patients were reviewed to determine the timing of the onset of end-of-life care period
as determined by physician.
Results indicated that at diagnosis both parents and physicians were optimistic about
prognosis. However, as the disease progressed parents’ realization that a cure was not
realistic was three months delayed compared to that of the primary oncologist. Parents’
recognition of no realistic cure occurred a mean of 106 days prior to death, while physicians’
documentation revealed their realization to be a mean of 206 days before death. The authors
suggest that pediatric oncologists may have less experience communicating terminal illness,
thereby inhibiting communication between physician and parents as the disease progresses.
When both parents and physicians recognized earlier that no cure was possible, palliative care
was more likely to be introduced. A discussion about their child having no realistic chance
for cure was reported by ninety-five percent of parents, with seventy-four percent indicating
36
that the primary oncologist participated in the discussion. A smaller number of nurses and
psychosocial clinicians participated in this discussion.
At diagnosis, eighty percent of parents revealed that they believed the primary goal to
cure their child. When parents realized that their child was receiving end-of-life care, the
majority reported that the primary goal was to extend life. Only thirteen percent reported
“lesson suffering” during this time. When asked what they now think the primary goal should
be during end-of-life care, thirty four percent reported to lesson suffering. Interestingly, when
a psychosocial clinician was involved in the child’s care there was greater correspondence in
the timing of physicians’ and parents’ understanding that the child had no realistic chance for
cure.
Conclusions surrounded the fact that considerable barriers exist in communication
between physicians and parents of terminally ill children. The study was not without its
limitations. Parents were asked to recall the timing of their knowledge of the terminal
diagnosis for their child an average of 3.1 years after the child’s death. The possibility of
selection bias is inherent in this study. Nonetheless, this study substantiates the need for a
greater focus on palliative care and enhancement of communication between medical
personnel and families.
Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salemschatz, S.,
Emanuel, E. J., & Weeks, J. C. (2000). Symptoms and suffering at the end of life in
children with cancer. The New England Journal of Medicine, 342(5), 326-333.
With cancer as the leading cause of non-accidental death in children, this author
asserts that high-quality palliative care be given to children and research in this area is
warranted. The researchers of this study investigated the extent to which children dying of
cancer suffered by interviewing parents after the child died. Interviewers elicited information
regarding specific symptoms the child experienced and whether treatment was received for
each, the extent to which the child suffered, the child’s level of anxiety, fear, and mood, and
the amount of fun experienced during the last month of life. Questions concerning parents’
perceptions of the physicians’ involvement during the end-of-life, quality of care and
communication provided, and peacefulness of the child’s death were asked.
A great deal of suffering from at least one symptom was reported by parents in 89%
of the children. The majority of children had little or no fun, were more than a little sad, and
did not receive active involvement by the oncologist at the end-of-life. Fatigue was common.
Researchers concluded that parents who reported the death of their child as peaceful and calm
were more likely to have had hospice involved earlier. The results are described in light of
the potential limitation imposed by parents’ perceptions of the child’s experience. Children
could have reported their actual experience differently, however the importance of devoting
greater attention to the over-all well being of sick children should not be undermined.
Yeh, C. (2002). Gender differences of parental distress in children with cancer. Journal
of Advanced Nursing, 38(6), 598-606.
With an interest in depicting gender differences in distress experienced by mothers
and fathers caring for a child with cancer, parents in Taiwan were recruited and divided into
groups based on the stage of illness/treatment that the child was receiving. Groups’ responses
were compared on measures of distress and marital satisfaction, namely a Chinese version of
37
the Parenting stress index/short form (PSI/SF), the Symptom checklist-35-revised (SCL35R), and the marital satisfaction scale in Chinese. The questionnaires were assembled into a
packet and either administered at the hospital or mailed out.
Analyses revealed that mothers reported higher levels of distress than fathers, but this
could potentially be attributed to mothers’ willingness to admit their stress. Marital
satisfaction was perceived differently by mothers and fathers, but both report the most marital
dissatisfaction during the first two months after the child’s diagnosis.
Limitations of the study include a lower percentage of respondent fathers than
mothers and the fact that the data collected represents one moment in time which could alter
parental stress and distress depending on the child’s stage of illness. Implications for future
research are described.
THEORETICAL LITERATURE:
Adams, M. A. (1978). Helping the parents of children with malignancy. The Journal of
Pediatrics, 93(5), 734-738.
This paper is a description of a group program that targets families with children with
malignancies. As one can imagine, the diagnosis of cancer in a child can be quite a
devastating experience. The author, in collaboration with others from the Department of
Social Work at Memorial Sloan-Kettering Cancer Center in New York, developed a 60minute, weekly, open enrollment group based on the premise that parents have similar
emotional responses and can strengthen their resources by learning from each other. Parents
of all children admitted to the hospital were invited by the social worker who leads the group.
Group goals’ included a decrease in isolation feelings and uniqueness, an increase in selfawareness and insight, an increase in competence, and increased strength in the ability to
consider the emotional needs of the entire family.
Although there is no agenda for each weekly meeting, Adams (1978) describes
common themes that are elicited most frequently. For example, parents often respond to their
child’s diagnosis with helplessness, fear, anger, guilt, and sadness. The need for medical
information about the patient is another common topic that apparently emerged throughout
groups. Many sessions included discussions about parents’ urge to overindulge in the sick
child or become overly protective. The author asserts that even sick children need boundaries
and limits must be intact. Problems with siblings are frequently debated, including feelings
they might have such as fear, confusion, and anger, as well as parents’ struggle to continue to
adequately care and attend to the siblings needs. Attempting to maintain a healthy marriage is
commonly cited as a source of stress for these parents, as they usually have to split their time
between caring for the ill child at the hospital while the other is attending to siblings and
household matters. Finally, the topic of death is inevitable within this group. When a child
dies, all the parents are profoundly affected.
Although this paper is dated, the content is not. It effectively summarizes many of the
issues that parents of children with varying diagnoses still experience today. Adams
concluded that group is an effective modality for these parents and provides the support they
need, however there is no empirical data or citations to back this statement up. Have they
tested the efficacy of the group? This information needs to be provided prior to asserting that
the group meets the parents’ needs.
38
Burke, P., & Elliott, M. (1999). Depression in pediatric chronic illness: A diathesisstress model. Psychosomatics, 40(1), 5-17.
The authors suggest that a diathesis-stress model of psychopathology can describe the
relationship of depression to pediatric illness. Since some, but not all, children with a chronic
illness become depressed, the diathesis-stress model accommodates this by asserting that
each individual has a particular set of vulnerabilities that lead to the emergence of a disorder
when activated by stress. Current diathesis-stress models of depression emphasize social,
cognitive, and biological vulnerability factors. Depression in pediatric chronic illness can be
conceptualized as the outcome of the interactions among the child’s vulnerabilities for
depression, the characteristics of the illness, and environmental stressors or life events. The
authors suggest that the biological vulnerabilities may include genetic predisposition to
depression, temperament, and female gender. Low self-esteem, a negative attributional style,
external locus of control, and ineffective coping strategies constitute the cognitive/affective
vulnerabilities. The social/behavioral component may include insecure attachment and poor
peer relationships.
The article is thorough, reporting on incidence and prevalence of depression in
pediatric chronic illness, risk factors associated with vulnerability including demographic
variables and family psychiatric history, and illness parameters associated with depression
including severity of illness, course of illness, medication, and other parameters. Research
and clinical implications conclude the review.
Burke, S. O., Kauffman, E., Harrison, M. B., & Wiskin, N. (1999). Assessment of
stressors in families with a child who has a chronic condition. American Journal of
Maternal Child Nursing, 24(2), 98-106.
The Burke Assessment Guide to Stressors and Tasks in Families with a Child with a
Chronic Condition was developed as a guide for nurses to utilize in providing quick, yet
effective care to families faced with this situation. The guide was apparently developed over
the previous decade, following a series of interviews and observations of nine families that
agreed to participate. Across families, the child’s chronic condition varied. Overall, 394
parents with a child with a chronic condition participated. 30 parents without a child with
chronic illness were included for comparison. The authors claim that none of the children in
the chronic condition were newly diagnosed, although “newly diagnosed” was not defined.
Nonetheless, the parents were described as experiencing the “plateau” subphase of the
chronic illness.
Following analysis, the authors concluded that 11 different sets of stressors and tasks
comprised the results they obtained. Under these 11 headings, each has several subcategories,
resulting in 52 issues of concern to be addressed in the guide. The 11 headings are as follows:
Gaining and interpreting knowledge, skills, and experience to manage a child’s health
problem; Managing burden of care for the child; Acquiring and managing physical resources
and services to manage child’s health problem; Identifying and managing sibling issues;
Acquiring and managing financial resources to care for child’s health problem; Maintaining
spousal, parental, and nuclear family relationships; Establishing and maintaining effective
social support; Maintaining health of other family members; Rearing a child with a chronic
condition; Maintaining effective relationships with health care system and other sources of
39
care; and Developing beliefs, values, and philosophy of life. With the purpose of
systematically broadening nurses’ perspectives of possible stressors and tasks that families
are experiencing, the guide appears to have face validity. Burke and colleagues assert that the
guide has construct validity, but further research is necessary to establish interrater reliability,
concurrent, and predictive validity.
Chaffee, S. (2001). Pediatric palliative care. Palliative Care, 28(2), 365-390.
This article provides the groundwork for understanding pediatric palliative care.
Chaffee starts out by defining pediatric palliative care, followed by listing the four groups
frequently cited as potentially able to benefit from it. Barriers to the initiation of palliative
care are listed in table format. As the author suggests that successful palliative care depends
on the integration of several groups of providers with the family, she describes each
contributing group that collaborates. The psychological impact of the illness on the ill child,
the parents, and the siblings were each granted a paragraph of discussion. Pharmacologic
issues, assessment of symptoms, and pain were emphasized. Pain was discussed in detail, as
the author asserts that it is most commonly feared by families. A few life-limiting diseases
are discussed, including malignant disease, cystic fibrosis, HIV, neurodegenerative disease,
muscle disorders, and cardiac, hepatic, and renal failure. To conclude, the author discusses
the preparation for death and reminds readers that rituals performed at the time of death are
influenced by the family’s religious and cultural beliefs. In essence, Chaffee contends that the
ultimate goal of pediatric palliative care is to provide the best quality of life possible for
children and their families.
Davies, B., Brenner, P., Orloff, S., Sumner, L., & Worden, W. (2002). Addressing
spirituality in pediatric hospice and palliative care. Journal of Palliative Care, 18(1), 5967.
In an effort to acknowledge the literature deficit concerning spiritual dimensions in
pediatric palliative care, members of the Children’s International Project on Children’s
Palliative/Hospice Services developed guidelines for clinicians in pediatric palliative care.
Spirituality is defined in several ways, followed by an overview of the literature’s attempt to
distinguish between spirituality and religion. While the authors reveal that children have a
great spiritual curiosity, they assert that little is actually known about their spirituality.
Recognizing that spirituality is influenced by many aspects of children’s lives, guidelines are
given for addressing spirituality in ill children, parents, siblings, and grandparents. The article
highlights the importance for clinicians of coming to terms with their own spirituality prior to
addressing others spiritual needs. Finally, suggestions are given for activities to aid in the
process of discussing spiritual issues with children. It is recommended to “enter into the
child’s world” assisted by various techniques such as art, bibliotherapy, writing, guided play,
and music.
Degeneffe, Charles E. (2001). Family caregiving and traumatic brain injury. Health &
Social Work, 26(4), 257-268.
The article reviews the extensive responsibility endured by families caring for a
traumatic brain injury (TBI) patient. Cognitive, physical, and psychosocial effects are
discussed in an attempt to explain how families perform and are affected by their caregiver
40
functions. Considerations for care provided highlight issues to be considered such as age,
race, socioeconomic status, income, patterns of living, ways of relating to a person with TBI,
and role changes in the family due to significant inability of the patient to function
independently. The author includes a discussion of caregiver stress and burden and the
difficulties researchers face in summarization of this topic. The way in which family
caregivers cope is discussed in the context of preinjury family characteristics and use of
external family resources. Implications for social workers are noted. As the needs of people
with TBI and their family caregivers are complex and extensive, the author concludes that
social workers must enhance their efforts to gain a thorough understanding of the consequent
stress and burden placed on families with TBI patients. They must take an active stance to
create better situations.
Enck, R. E. (2001). Pediatric pain control. American Journal of Hospice & Palliative
Care, 18(6), 365-366.
In this brief article, Dr. Enck, MD, asserts that assessing pain control in children is
essential to developing a treatment plan. He gives methods of assessing pain in children
including body charts, faces scales, numeric scales, diaries, color tools, visual analogue
scales, and observation of behavior. The author describes the difficulty children often have in
taking large amounts of drugs. Myths surrounding undertreatment of pain in children are
refuted as Dr. Enck gives the facts regarding these controversial topics. In closing, the author
asserts that children should not suffer.
Fielding, D., & Duff, A. (1999). Compliance with treatment protocols: interventions for
children with chronic illness. Archives of Disease in Childhood, 80(2), 196-200.
This brief, albeit important, paper highlights a critical component of treating children
with chronic illness: adherence. Regardless of the treatment’s effectiveness, health care will
be compromised if children and parents do not adequately follow instructions. The authors
reviewed some findings from the literature, as well as suggested ways to implement
adherence techniques into practice.
Critiquing the literature revealed some obvious setbacks in drawing conclusions
regarding compliance. First the traditional definition of compliance, “the extent to which a
person’s behavior coincides with medical advice,” is not applicable to complex regimens
where treatment is individualized and flexible. A term such as “levels of self care behavior”
may be more appropriate, whereas “compliance” or “adherence” could be applied to
situations that do not fluctuate. In addition, ways of measure compliance are not sufficient.
Health status of health outcome is among the most popular way of measuring this term, yet is
also apparently most problematic. Measures of compliance and health status are too often
used interchangeably when, in reality, there has little empirical data to support the link
between the two. Finally, families are often labeled “compliant” or “non-compliant,” yet it is
likely that they are actually compliant with some regimens and less so with others.
Compliance should not be treated as a unitary concept.
Factors affecting compliance are displayed graphically which is appealing to the
reader. At a glance, the reader can glean several important attributes that contribute to
compliance. Compliance has been shown to decrease with age. Socioeconomic status appears
to lower the level of compliance, likely due to difficulties keeping children’s appointments as
41
well as adhering to dietary regimes. Non-adherence has been found to increase with time
since diagnosis. Not surprisingly, children with supportive parents and families are typically
more compliant. Health care professionals have a critical role in advocating for compliance
through educating patients.
Interventions typically fall into three domains: educational, cognitive/behavioral, and
self regulatory skill training. Educationally, parents often see themselves as knowledgeable
and compliant yet they have different goals than clinicians. Thus educational programs
should address both clinical and parental goals to facilitate a fusing of the two, in addition to
promoting knowledge regarding the condition and its medical treatment. Behavioral
interventions such as self-monitoring through chart keeping, goal-setting, behavioral
contracting, and corrective feedback have proved to be useful in increasing adherence.
Cognitive behavioral approaches have similarly been effective, particularly in the effort to
reduce pain. While these approaches have been shown to be effective in the short term, there
is little data to support effectiveness in the long term. The self regulatory training is based on
the stages of change model developed by Prochaska and DiClemente. This model addresses
adherence in a multifactorial nature, addressing lifestyle changes over long periods of time,
with the goal of preventing relapse. This training aims to empower parents as effective
managers of their child’s illness. This method requires close working relationships with
health care providers. Most importantly, this particular method views relapse as a learning
experience.
In conclusion, more research is needed that surpasses the previous shortcomings of
poor sampling and poor data collection. With psychologically-based interventions proving to
be effective, the authors recommend that the goal be to incorporate these procedures into
medical treatment regimens and systematically test their effectiveness.
Geist, R. A. (1979). Onset of chronic illness in children and adolescents:
Psychotherapeutic and consultative intervention. American Orthopsychiatric
Association, 49(1), 4-23.
Geist highlights the importance of psychological intervention and caregiving during
the initial stages of illness, given that this could affect the extent of psychological
disturbances throughout the duration of the disease. The author describes his experience of
previous consultations with chronically ill patients who seem to have exhibited similar
reactions during the onset period of disease. Consequently, the paper attempts to address the
lack of information regarding this area of psychological intervention by way of clinical notes,
theoretical hypotheses, and practical suggestions. Whether it is a physical or emotional loss,
the author points to the commonality that any child or adolescent diagnosed with a chronic
illness suffers a loss. Most importantly, a loss of self and body image is common. Asserting
that a child must have the capacity to mourn before energy is invested elsewhere, suggestions
are given for restructuring the child’s environment such that mourning is feasible. As many
children believe their parents are not equipped financially or emotionally to adapt to chronic
illness, the paper addresses the anxiety rooted in this belief. Geist explains the aggression that
often builds within a child as he/she fears that they must protect their loved ones from guilt
and sadness. Suggestions are given for therapeutic and environmental management in the
context of this anxiety. In addition, provisions are described to address concerns about their
adequacy as a boy or girl in those with chronic illness. Coping mechanisms, as sometimes
42
employed by these children, are discussed. Finally, helplessness and depression are
recognized and explored as often inherent in the caretaker’s responsibility for the patient. A
final request is made by Geist who recommends that those responsible for emotional care of
the patient collaborate with those in charge of physical care in hopes of forming a mold that
will enhance the path by which the patients travel.
Goldman, A. (2001). Importance of palliative care for children is being increasingly
recognized. Bmj, 322, 234.
Goldman introduces herself as a representative of Palliative Care Working Group of
the Royal College of Pediatrics and Child Health, writing to “alert” people of special needs
for critically ill children. The distinction is made between illnesses from which children die
and those that kill adults. The author highlights the influence that ongoing physical,
emotional, and cognitive development has on children in their understanding of their disease,
their ability to communicate, and their level of dependence. The author seemed to seek a
debriefing to make it known that pediatric palliative care is gaining attention, but yet deserves
more.
Haas, B. K. (1999). Clarification and integration of similar quality of life concepts.
Image: Journal of Nursing Scholarship, 31(3), 215-220.
For as complex and multifaceted as the concept of quality of life (QoL) is, these
authors effectively identified major obstacles that preclude understanding of QoL,
differentiated QoL from other closely related concepts, and offered a definition of QoL. In
justification of the paper, Haas asserts that it is imperative to study QoL because it always
matters to the patient. The historical evolution of QoL is briefly described, followed by a
description of the emergence of the differentiated term health-related-quality-of-life
(HRQOL). Four critical attributes of QoL, as originally proposed by Meeberg (1993) via a
concept analysis, were provided. These include satisfaction with one’s life in general, mental
capacity to evaluate one’s own life as satisfactory or otherwise, an acceptable state of
physical, mental, social, and emotional health as determined by the person referred to, and an
objective assessment by another that the person’s living conditions are adequate and not life
threatening. Several sample definitions of QoL are provided in a table.
QoL is distinguished from four terms with which it is frequently confused;
specifically functional status, satisfaction with life, well-being, and health status. More
common approaches to measurement of QoL, unidimensional measures, multidimensional
single-scale measures, and multiple separate measures, are reviewed. A summary of
inconsistencies identified in the literature are reviewed. The author apparently conducted a
literature review using several different search engines, however the sources and methods are
only mentioned in the abstract. They are not highlighted in the body of the article.
Relationships among concepts of QoL, well-being, satisfaction with life, and functional status
are displayed on a map. Finally a definition of QoL is offered. Clinical implications are
described and future directions for research are suggested. This paper would be useful as an
introduction to the concepts of QoL and HRQoL for readers that are unfamiliar with the
concepts. It is straight forward and presented cohesively making it inviting for new readers in
this domain.
43
Ham, C. (1999). Tragic choices in health care: lessons from the Child B case. Bmj, 319,
1258-1261.
Using the case of Jaymee Bowen, commonly known as Child B, Ham highlights
several ethical and practical issues relevant to decision makers in health authorities and
primary care groups. Diagnosed with first non-Hodgkin’s lymphoma, and then acute myeloid
leukemia, Jaymee underwent a bone marrow transplant only to relapse nine months later. At
the mere age of 11, Jaymee was denied anything other than palliative treatment from her
pediatricians in Cambridge. The young girl’s father sought a second opinion in the United
States, and found specialists who would recommend chemotherapy followed by a possible
second transplant. Unfortunately the Cambridge Health Authority refused to pay for such
treatment. Consequently, Jaymee’s father took the case to court but the Court of Appeal
upheld the Cambridge Health Authority’s decision. Due to media coverage of the case, an
anonymous donor offered to provide funds for treatment. Jaymee had donor lymphocyte
infusion, but died a few months later.
The underlying ethical issue stems from whether resources should be used to benefit
the population as a whole or in response to fulfill individuals’ needs who are facing death.
The author describes Jaymee’s father’s actions governed by the “rule of rescue” which states
that there is an obligation to intervene on behalf of an individual potentially dying, despite
counteraction against the needs of the community as a whole. On the contrary, the child
cancer specialists asserted that the rule need not be adhered to seeing as “no reasonably
effective treatment exists”. The author continues to discuss the ethics of priority setting and
the process of decision making, with the hope that consistency and legitimacy will uphold
due process such that the public will better understand choices in health care.
Heijmans, M. J. W. M. (1998). Coping and adaptive outcome in chronic fatigue
syndrome: Importance of illness cognitions. Journal of Psychosomatic Research, 45(1),
39-51.
Seeking to investigate the nature of illness cognitions and coping behaviors of
patients with chronic fatigue syndrome (CFS), one of the authors’ major questions was
whether physical attribution and avoidance of physical activity were most important for
adaptive outcome or if other cognitions played a role. Following random selection, 98
individuals consented to participate in the study. Demographic information was provided.
Interestingly, 84 of the 98 participants were female. The majority of subjects were married,
yet not all, and it seems that the existence of a marriage bond could act as a confounding
variable and affect coping behaviors of patients. Furthermore, 28.6% of the sample was
“highly educated,” though this was not defined. Finally, subjects’ diagnosis was made
anywhere from 0.5 to 14 years prior. It is logical to suspect that coping behaviors of those
subjects recently diagnosed could vary tremendously from those that have been coping for 14
years.
Interviews were conducted regarding illness representations, coping, and functioning
of the patients through structured questions with room for qualitative explanation. Measures
were thoroughly described. Mean scores and standard deviations were calculated for different
dimensions of illness representation and listed in table form. Respondents that reported larger
numbers of symptoms of CFS also experienced their illness as less controllable, more
chronic, and believe that CFS has more serious consequences. Correlations between
44
dimensions of illness representation, coping strategies, and aspects of adaptive outcome are
presented in a table. In general, dimensions of illness representation were more strongly
correlated to adaptive outcome than to coping. Multiple regression analyses were employed
to determine whether the beliefs of CFS patients in regard to the identity, course,
controllability, cause, and consequences of their illness contribute to the adaptation of certain
coping strategies. The results of these analyses are presented in table form. Cognitiveavoidant coping most effectively explained impairment of social functioning, mental health,
and vitality. Discussion and limitations of the study follow.
Helder, D. I., Kaptein, A. A., Van Kempen, G. M. J., Weinman, J., Van Houwelingen, J.
C., & Roos, R. A. C. (2002). Living with Huntington’s Disease: Illness perceptions,
coping mechanisms, and spouses’ quality of life. International Journal of Behavioral
Medicine, 9(1), 37-52.
Although a decent literature review was provided, the authors were not too selective
in the works they chose to cite. Numerous citations are provided for single statements, many
different times through the review. The authors’ goals were to describe the illness perceptions
and coping mechanisms of patients with Huntington’s Disease (HD) and assess their role in
the quality of life (QoL) of these individuals. Spouses were recruited from one medical center
and one association for Huntington patients. A total of 90 spouses were interviewed in their
home by a psychologist. Questionnaires were apparently administered verbally. The HD
patients were interviewed separately. It is unfortunate, however, that the authors’ felt the
results of the interviews were “beyond the scope of this article” and are reported elsewhere.
“Elsewhere” was not revealed. Information related to demographics and illness variables, and
the various scales employed are provided. Briefly, the Sickness Impact Profile (SIP), adapted
version of Illness Perception Questionnaire, COPE, and Medical Outcome Study 36-item
Short Form Health Survey (MOS SF-36) were among other measures utilized.
Sufficient description of statistical analyses is provided, along with accompanying
tables. The authors’ effectively redirect the reader to their original research questions before
diving into the discussion. Findings included a strong illness identity perceived by spouses
regarding their partner’s HD. Spouses also indicated that the illness had negative
consequences for their daily lives and had little hope for cure or control of the symptoms.
Spouses reported dealing with the problems induced by HD by accepting the disease and its
related problems, as well as assuming an active role and attempting to identify strategies to
solve these problems. Related to the authors’ second goal, the spouses of patients with HD
perceive the disease in such a way so as not to have an affect on their own QoL. Explanations
for these findings are offered. Limitations of the study are provided, yet not once is an
operational definition of QoL provided! This weakness could perhaps outweigh the strengths
of the study.
Hilden, J. M., Emanuel, E. J., Fairclough, D. L., Link, M. P., Foley, K. M., Clarridge, B.
C., Schnipper, L. E., & Mayer, R. J. (2001). Attitudes and practices among pediatric
oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical
Oncology Survey. Journal of Clinical Oncology, 19(1), 205-212.
The authors collaborated to report the results of the 1998 American Society of
Clinical Oncology (ASCO) survey. The 118 question survey sought to assess the attitudes,
45
practices, and challenges associated with end-of-life care of patients with cancer. Results
indicated that there is a lack of formal education and training in pediatric palliative care and
while physicians believe they are competent in pain management, a discrepancy emerged as
other literature asserts that parents of patients or patients themselves perceive the ill person
experiencing pain. A need for a multidisciplinary approach in palliative care became clear as
respondents admitted to a lack of readily available palliative care team and/or pain service.
Another barrier stems from lack of communication between physicians and dying children
and their families. The results of the survey suggest that pediatric oncologists feel competent
discussing transitions from curative to palliative care with families, but the authors state that
other research has found bereaved parents to be quite angry and confused by the lack of
communication. The difference between allowing a child to die and performing euthanasia
seems to be a problem area. The majority of respondents expressed practicing euthanasia
when in reality they were administering medication to relieve pain. The authors assert that if
the oncologists believe they are causing a patient’s death, the likelihood of parents believing
this is greater. Finally, a few paragraphs describe programs and organizations whose primary
function is to eliminate barriers to effective pediatric palliative care.
Himelstein, B. P., Jackson, N. L., & Pegram, L. (2001). The power of silence. Journal of
Clinical Oncology, 19(19), 3996.
The power of silence is conveyed through a synopsis of a fatally ill seven-year-old girl
and the interactions the palliative care team have with the child’s mother. A few members of
the team reflect on the clinical and spiritual experience they shared with the mother in
silence.
Ivan, T. M., & Glazer, J. P. (1994). Quality of life in pediatric psychiatry. Child and
Adolescent Psychiatric Clinics of North America, 3(3), 599-611.
This article reviews the literature on quality of life in pediatrics, focusing primarily on
pediatric oncology. Consistent with many authors’ views regarding the variability in defining
quality of life, Ivan and Glazer contend that several dimensions have been identified in the
literature as important to the individual’s sense of quality of life. They further explain that no
precise meaning or definite application of the concept has been agreed upon. The importance
of assessment of quality of life in pediatrics is highlighted because there are discrepancies
surrounding who, ideally, should/can provide this information. Should the judgment of health
care professionals, spouses, and family members be relied upon as opposed to eliciting
information from the child? The authors’ conveniently highlight various domains that are
likely affected by cancer, or chronic illness in general, however these domains are not
discussed in any depth. Rather, a simple overview is presented on the psychological,
cognitive, social, family, physical, and economic factors that potentially affect these patients.
If a reader is particularly interested in the way in which one or more of these domains affects
quality of life, this article does not provide sufficient information. Additional references,
however, are cited. The assessment of quality of life is the final focus of this article.
Recommendations from the literature as to what constitutes an ideal quality of life measure
for children are presented, as well as descriptions of some existing measures that have
employed for this purpose. This was beneficial in that a brief list with descriptions was
generated on one page as opposed to doing individual searches for specific instruments that
46
could potentially be used to measure quality of life in children. As a qualitative review this
does raise questions to be answered through further investigation, however the authors do not
specifically address directions for future research. The reader can deduce the gaps in quality
of life research that need to be pursued by simply reading the article.
Kane, J. R., & Primomo, M. (2001). Alleviating the suffering of seriously ill children.
Journal of Hospice & Palliative Care, 18(3), 161-169.
The authors, as physicians, maintain the stance that modern medicine has succumbed
to the fast-paced, technological society that we live in, directing attention largely to solely
physical aspects of disease. Kane and Primomo (2001) declare that this focus on physical
aspects of illness is often at the expense of a patient’s pain and suffering. Acknowledging the
deficit of academic and clinical training in palliative care in medical schools, the physicians
caring for children with terminal illness acquire what skill they may have through trial and
error. The authors highlight palliative care as a necessity to link a highly technologically
sophisticated, scientific disease approach model of medicine with a “…compassionate,
humanistic, person-oriented approach to patient care” (pp. 162).
Palliative care is discussed in relation to human suffering and the mind-body
dichotomy that has traditionally dominated medicine. The emotional, physical, and spiritual
domains that comprise human experience are addressed. Recognizing that neither science nor
compassion for life can cure some suffering that results from disease, Kane and Primomo
challenge medicine in the 21st century to devote the art of medical practice to improving
quality of life for all patients.
Lister, E. (2001). Liza’s Death: a personal recollection. Journal of Pain & Symptom
Management, 21(3), 243-249.
This paper provides a unique perspective on the death of a child from life threatening
illness. The author is not only the mother of a deceased child who had leukemia, but also a
physician. Dr. Lister relays her personal, traumatizing experience of losing her six year old
daughter to cancer. She writes retrospectively, four years following her daughter’s death. The
tale is told from the initial symptom that Liza, her daughter, experienced, to Liza’s final
hours. Not only are the series of medical treatments, including a bone marrow transplant,
described, but Lister also incorporates the emotions that she and her husband and older
daughter experienced along the way. The suffering and agony is easily absorbed by the
reader. Despite the family’s sadness and anger, there is much courage and strength conveyed
to the reader. Dr. Lister takes you into the daily trials and tribulations that she and Liza
tackled together. Her experience with both formal and informal social support was shared, as
well as her feelings regarding the care and support that hospice provided for the family. Liza
is quoted at various times throughout the article as she ponders death and dying. Dr. Lister
presents her story along a timeline which is helpful for the reader to understand different
issues that arose at various times. She concludes by stating that she is comforted knowing
that her daughter died the death she wanted. While tears seem imminent as one reads this
paper, it truly brings life to the dreary topic of death.
Meisel, A., Snyder, L., & Quill, T. (2000). Seven legal barriers to end of life care: Myths,
realtities, and grains of truth. JAMA, 284(19), 2495-2501.
47
While there is currently an active trend towards providing comprehensive palliative
care to terminally ill patients, the end of life domain can leave healthcare workers and family
members faced with some particularly challenging situations. Given the abundance of myths
that exist about what is ethically and legally permissible in end of life care, the authors sought
to provide clarification. An excellent table is inserted into the paper that identifies current
legal myths and realities discussed in the article.
To the surprise of many, life-sustaining treatment may be retracted for patients
without decision-making capacity if the patient’s surrogate states that this was the patient’s
wish, or, in most states, if it was only the patient’s probably wish. The best evidence of a
patient’s wish is relayed in an advanced directive, yet apparently less than one fifth of
patients complete one. If there is a dispute among family members regarding an incapacitated
patient’s wishes, the wishes of the member advocating for the most aggressive medical
approach will apparently be fulfilled. This stems from the greater legal risk in stopping
treatment as opposed to the lesser risk of continuing treatment. Another myth that often arises
surrounds artificial nutrition and hydration. Physicians can indeed withdraw them if the
patient refuses this treatment or the appropriate standard is upheld in the case of an
incapacitated patient (as discussed above).
Although many hospitals may adopt requirements for consulting a risk manager
before making end of life decisions, this is not legally binding. The objective of risk
management is to minimize legal risk to the institution, and thus does not always result in
ethically or clinically sound actions for patients. Advance directives were described as the
best source of information about an incapacitated patient’s wishes. Despite the many myths
that exist, advance directives that do not follow the statutory form are typically valid in most
states. Furthermore, they are most often enforceable in the state where the patient currently
resides, regardless of which state it was originally drafted in. Surprisingly, oral advance
directives are also legally valid. The patient’s statements, however, should be documented in
the patient’s medical record. There are inherent problems with this method, as it is difficult to
prove that such oral statements were made.
Physicians often err on the side of caution when administering high doses of pain
medications to terminally ill patients. As long as the physician’s intent was to relieve pain
and suffering however, and not end life, the physician cannot be charged for assisted suicide.
Physician assisted suicide is illegal in most states, yet terminal sedation may be a legal option
to treat horrific symptoms in the terminally ill. There are two clinically accepted practices
that comprise terminal sedation: the patient can be sedated to unconsciousness or a level that
ensures escape from intolerable suffering; life-sustaining therapy such as food and fluids can
be withheld.
Finally some light is shed on the confusion regarding whether physician-assisted
suicide can be legalized in some states. This practice is legal in Oregon. Although the
Supreme Court held in 1997 that laws making assisted suicide a crime are not
unconstitutional, the court did not restrict states from legalizing this practice. Each state is
left to address the legalization. This paper highlights some essential boundaries for health
care providers working with terminally ill patients. It is written, however, for a varied
audience. The language does not require a medical dictionary to depict their message. It is
appropriate, and almost necessary, reading for any individual as eventually we all have to
face end of life issues.
48
Midence, K. (1994). The effects of chronic illness on children and their families: An
overview. Genetic, Social, & General Psychology Monographs, 120(3), 309-326.
Midence reviews the effects of chronic illness on children and their families,
beginning with a definition of chronic illness: “an illness that can last for an extended period,
at least three months, often for life, and cannot be cured.” He briefly describes some common
chronic illnesses such as asthma, congenital heart disease, chronic kidney disease, sickle cell
disease, diabetes, and cystic fibrosis, but other common childhood chronic illnesses such as
cerebral palsy and muscular dystrophy were not acknowledged. The author highlights the lack
of research in children’s coping styles, stating that many authors identify children’s
malfunctioning and negative effects. The overview continues to review some literature
regarding children’s coping with chronic illness, adjustment to illness, and the effect of
chronic illness on family members.
Midence makes a concluding statement that most children with chronic illness do not
exhibit psychological disturbance, based on the literature he reviewed. This seems to be a
bold conclusion considering he only entertained a portion of the literature addressing this
topic. He calls for cross-cultural studies of chronic illness which is necessary. In essence, this
article provides a concise overview of some of the issues that are still relevant in more recent
literature. It provides the reader with a general understanding of some critical issues to
ponder in the chronic illness literature.
Muscari, M. E. (1998). Coping with chronic illness. American Journal of Nursing, 98(9),
20-22.
This paper serves as a reminder for any individual that interacts with a chronically ill
child or adolescent to provide education, support, and a sense of normalcy for this population.
Using "14-year-old Margaret" who suffers from cystic fibrosis as a case example, the author
examines whether Margaret's reaction to her condition is normal in the context of physical
limitations and barriers to identity formation. A list of ways to empower teenagers with
chronic health conditions is provided. Specific concerns that need to be addressed are
highlighted such as the ability to drive and sustain flights of stairs or long walks,
development of sexuality, and attainment of employment and careers. The author briefly
addresses ways to facilitate the transition for adolescents into young adulthood since the
implications of their disease could change slightly. The underlying message here is to be
compassionate, a good listener, and take an active role in engaging the support of others in
society.
Palermo, T. M. (2000). Impact of recurrent and chronic pain on child and family daily
functioning: A critical review of the literature. Developmental and Behavioral Pediatrics,
21(1), 58-69.
Asserting that research on recurrent and chronic pain in children has focused
primarily on the assessment of pain symptoms and has neglected of functional consequences
of pain, the author reviews the current status of research in this realm. The functional impact
of pain is defined, followed by a discussion of various domains that are affected by recurrent
and chronic pain. Factors that influence children’s functioning in response to pain including
coping, anxiety and depressive symptoms, and family reinforcement of pain behavior. The
49
literature review indicates that functional outcomes can be improved by cognitive-behavioral
interventions. A summary of identified treatment studies on enhancing the functioning of
children with recurrent and chronic pain is listed in a table format. Methodological issues in
research are reviewed in conjunction with recommendations for future research.
Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of traumatic brain injury on the
family: A critical review. Rehabilitation Psychology, 44(1), 6-35.
This review is quite comprehensive in that it presents findings from both crosssectional and longitudinal traumatic brain injury (TBI) family outcome studies. The studies
included outline a variety of findings and issues to be addressed in future studies. Although
some caregivers of people with TBI report higher levels of family dysfunction, others seem to
adjust quite well and report low stress levels. The author notes that using different assessment
measures is likely to yield varying perspectives of stress within a sample. There has been
some support for the notion that burden and stress in TBI relatives may be more evident
within the first year after the patient’s discharge. Yet other longitudinal studies cited suggest
that burden in relatives increases gradually over time. A few researchers have highlighted
personality and emotional changes in TBI patients as a greater source of distress for relatives
than physical and cognitive changes. Lack of consistent respondents at each assessment
period has been a consistent criticism in longitudinal studies. In addition, the terms “stress,”
“distress,” “burden,” and “strain” are often used interchangeably which is problematic. There
is a need for consistent definitions.
Perlesz and colleagues also noted that access to rehabilitation services could factor
into the levels of distress that relatives are experiencing in some samples that are utilized in
TBI studies. Differences in outcome studies are reviewed regarding levels of stress
experienced by spouses and parents caring for a partner or adult child with TBI. Many
samples for these studies were self-selected from self-help groups which introduces a
possible selection bias. The impact on children of a parent’s head injury is briefly discussed,
but there is a dearth of research in this domain. Greater attention has been paid to siblings of
children who have acquired head injuries, but this is only reviewed in short. Finally, the most
commonly used assessment measures in TBI are presented, along with strengths, weaknesses,
and available reliability and validity data. This paper is well done and provides a thorough,
critical review of the literature for TBI researchers and others. It is highly recommended for
an individual seeking research in this realm.
Pierce, C., Kenny, M., Peters, M., Mok, Q., & Petros, A. (2000). End-of-life decisions for
newborn infants. The Lancet, 356, 946.
Remarks by the authors assert that the demand for intensive care outweighs the
availability of this treatment, thereby making prioritizing admissions inevitable.
Acknowledging the ethical debate surrounding withdrawing and withholding treatment from
newborn infants, the question is posed “Is all life equal?” While advances in technology
permits excellent neonatal care, situations do arise where a child’s life may have been
restored, only to the detriment of the child however. These pediatric intensivists argue that
parents often expect miracles for their children when they are subjected to intensive care,
despite the fact that the realistic chance for recovery is meek. Consequently the specialists are
50
faced with an ethical and moral dilemma regarding who they treat and from whom treatment
is withdrawn.
Sloper, P. (1999). Models of service support for parents of disabled children. What do
we know? What do we need to know? Child: Care, Health, and Development, 25(2), 8599.
This paper was designed to review evaluation studies that identified models of
services that met needs of parents of disabled children. Stressors and needs of the family and
child are discussed within the medical model and social model frameworks. The importance
of parent support services is highlighted in consideration of the fact that lack of parental
support and high levels of parental distress can affect the child’s well-being; the converse,
however, is not necessarily true. Supporting parents does not automatically result in wellbeing for the child. Lazarus and Folkman’s cognitive model of stress and coping (1984) is
reviewed and noted as the most influential model in research on families of disabled children.
The hallmark of this model is that people differ in their appraisals of similar events and
circumstances, and thus it cannot be assumed that every parent of a disabled child labels the
experience as a source of stress.
Factors related to parental well-being are explained, the first of which is in regards to
disability severity. Families with more severely disabled children do not inevitably appraise
their situation as more stressful. Rather, problems with the child’s behaviour or sleeping
problems are more likely to be experienced as stressful. In addition, material, personal and
social resources have been found to have a strong correlation with parental well-being.
Insufficient income, inadequate housing, lack of informal social support, and feeling out of
control are sources of anxiety and stress for these families.
Ways of providing parent support are introduced, including key worker models,
parent counseling models, parent partnership models, and coping skills models. The authors
draw similarities from the aforementioned models that define them as effective interventions.
These characteristics include assessing and meeting family needs holistically, relationship
building between parents and professionals, the availability of one consistent contact person
for the family, empowering parents, and recognizing parents’ expertise in caring for their
child. In conclusion, the authors suggest a transition in research priorities from finding out
what the problems are to discovering solutions. Process/Outcome evaluations of the models
are recommended. It is noted once again that one of parent’s main complaints surrounds the
difficulty in finding out about services and thus this is identified as an essential endeavor for
future research.
Wood, Beatrice L. (1994). One articulation of the structural family therapy model: a
biobehavioral family model of chronic illness in children. Journal of Family Therapy,
16, 53-72.
The Biobehavioral Family Model (BBFM) is presented as a general systems theory in
which biological, psychological, and family levels collaborate into a theory that explains
family interaction and their influences upon one another. Basic assumptions and
considerations of the BBFM are explained, as well as one of its key features that stipulates a
proposed connection between the individual-level of biobehavioral (physiological, emotional,
and behavioral) reactions and the family-level construct of interpersonal responsivity
51
(responding physiologically, emotionally, or behaviorally). A case example is described using
a BBFM approach to the treatment of a family with a SCIDS (severe combined immunodeficiency syndrome) child. Since family and individually oriented theory merge to form the
BBFM, it is thought to enhance the study of relations among physical, psychological, and
social aspects of health and illness. In conclusion, the author describes the theoretical, clinical
and training implications of the BBFM.
MEASUREMENT LITERATURE:
Eiser, C. (1997). Children's quality of life measures. Archives of Disease in Childhood,
77(4), 350-354.
The objective of this article was to describe the status of the concept of measuring
QoL as it stands now, highlight problems and concerns, and provide direction for the future.
As QoL reflects the unique perceptions of treatment by children and their families, it is a
multidimensional measure that does not remain static for everyone. The author states that
adults and children view their QoL very differently, often with children maintaining more
optimism. Therefore QoL measures used with adults are not appropriate for the use with
children and/or adolescents, particularly because those used with the latter group must be
sensitive to accommodate for the normative developmental changes that take place.
QoL has a significant role when it comes to making a decision between continuous or
intermittent treatment. The author contends that these measures may have potential in
evaluations of interventions and as a screening tool to select children with particular
difficulties. Acknowledging the debate between using generic or specific QoL measures,
Eiser asserts that generic measures lack sensitivity. She identifies the basic domains of QoL
that have been agreed upon as functional status, disease and treatment related physical
symptoms, and psychological and social functioning. Approaches to measurement
development are currently psychometric or rooted in health economics, however the author
suggests that QoL measures are not suitable for either. Disease specific measures are
addressed within domains of cancer, diabetes, and asthma. Implications for the future are
discussed.
Eiser, C., Vance, Y. H., Seamark, D. (2000). The development of a theoretically driven
generic measure of quality of life for children aged 6-12 years: a preliminary report.
Child: Care, Health, and Development, 26(6), 445-456.
This study tested a measure of quality of life that is based on the assumption that a
higher reported QOL reflects less of a discrepancy between the actual self and ideal self,
referred to as Self-Discrepancy model. The Exqol is a computer generated measure of QOL
designed for children between six and twelve years of age. The authors sought to establish
psychometric properties of this measure using a sample of children with asthma, their
parents, and a healthy comparison group. Children with asthma also completed the Childhood
Asthma Questionnaire (CAQ) and their mothers completed a measure of child vulnerability
to health problems and caregiver QOL.
Support for the Self-Discrepancy model was provided as children with asthma
reported greater discrepancies compared to healthy children. Significant correlations were
found between discrepancy scores and two of the four subscales of the CAQ for children with
52
asthma. Children who rated their asthma as more severe also had higher discrepancy scores.
Acceptable internal reliability and validity was found for the Exqol, and it was successfully
able to distinguish between children with asthma and healthy controls. Methodological
improvements are included for future work.
Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with
chronic illness. Archives of Disease in Childhood, 84(3), 205-211.
The purpose of this article, written in the UK, entailed identifying and reviewing
current available generic and disease specific measures of quality of life (QoL) in children,
followed by making recommendations warranted for improving the measures. The authors
recognize that the definition and measurement of QoL have been a matter of considerable
debate, given that it is usually described as a multidimensional construct accounting for
several domains. In addition, QoL encompasses both a subjective and objective component
which consequently can result in different individuals with similar objective reports but
tremendously varying subjective reports.
In accordance with the trend in the medical world to provide more comprehensive,
collaborative care to children with chronic illness, Eiser and Morse contend that children’s
opinions of their own health status are often disregarded due to their age or status. This is
detrimental, according to the authors, because children and parents do not necessarily share
similar views about the impact of illness. Parents' views may be masked by their own hopes,
fears, and realities regarding their child's illness. Thus this report was designed to highlight
QoL measures that are appropriate to use on children with chronic illness and subsequently
advise future research on the development and application of new and/or revised QoL
measures.
Literature search and inclusion criteria used are reviewed. The search resulted in 137
papers retained for review, with 43 aimed at developing a new measure, 79 devoted to further
development and application, and 15 that adopted a battery approach to assessment of QoL.
Among the generic measures, nine required child and parent assessment, two required parents
only, and eight necessitated children only. Disease specific measures ranged from seven
including provision for child and parent assessment, five for parents only, and twelve for
children only. Measures were categorized according to the chronological age of the child
targeted, and these categorizations are given. QoL domains assessed ranged between one and
seventeen. Items on any one measure ranged from one to one-hundred-fifty-three. The study
cites internal consistency, test-retest, and inter-rater reliability as the types of reliability
reported. Similarly, construct, clinical, concurrent, and criterion validity were reported for
different measures. The authors noted that measures were identified according to where they
were developed also, which included United States, UK, Canada, Holland, Germany, Israel,
Spain, Sweden, Norway, and Finland.
The discussion grants merit to the importance of measuring QoL in children. Analysis
of measures revealed that only three generic measures and two disease specific measures
fulfill the most basic psychometric criteria. Recommendations include the need for a brief
measure of QoL that can be completed during a typical clinical visit and administered with
little training or expertise required. Eiser and Morse assert that measures should identify
physical symptoms, emotional wellbeing, as well as assessment of school or learning needs.
The Pediatric Quality of Life (PedsQL) was highlighted as one of the more thoroughly
53
developed measures currently available. If the goal is to achieve greater school integration or
improve family functioning, the Child Health Questionnaire was suggested. BASES, a
measure developed for children undergoing bone marrow transplantation, was found to fulfill
criteria identified.
Inconsistencies and problems associated with measuring QoL in children were
reviewed. As previously mentioned, there is confusion regarding the definition and
measurement of QoL, a limited number of disease-specific measures are available,
discrepancies exist between parent and child ratings, measures for self completion by
children are scarce, domains assessed vary, and measures developed in one country may not
be appropriate to administer in another country considering cultural differences. In essence,
the authors highlight a severe need to improve the QoL measures.
Gilbody, S. M., House, A. O., & Sheldon, T. (2002). Routine administration of health
related quality of life (HRQOL) and needs assessment instruments to improve
psychological outcome – a systematic review. Psychological Medicine, 32(8), 1345-1356.
This review sought to elucidate the usefulness of routine HRQOL and needs
assessment in the recognition and management of psychiatric disorders in non-psychiatric
settings and in the management of previously recognized psychiatric disorders in psychiatric
care settings. The authors indicate that HRQOL and needs assessments are potentially useful
because clinicians are often unaware of patient’s social and psychological problems.
Furthermore, standardized measurement of the patient’s progress over time may inform the
clinician when making treatment and discharge decisions for the patient. Apparently
empirical evidence is available that highlights the lack of routine HRQOL and needs
measurement by clinicians. However outcome measurement has been criticized as uninterpretable and costly, among other criticisms, and thus this paper evolved.
Their search strategy is clearly outlined and inclusion criteria for studies were
provided. Studies were judged according to accepted quality assessment criteria, using the
Jadad scale. Nine studies using HRQOL instruments in non-psychiatric settings were
identified. Details of the studies are listed in table form. Details of the study design and
quality were included, in addition to information regarding which questionnaires were
utilized in each of the nine studies identified.
Overall, the authors concluded that negative evidence was actually accumulated that
does not support routine use of HRQOL instruments to improve quality of care and mental
well-being of non-psychiatric populations. In addition, there was no randomized evidence to
support the routine use of HRQOL or needs assessment instruments in improving the quality
of care or outcome of patients with recognized psychiatric disorders. The findings are
discussed separately. It is recommended that further research be initiated that incorporates
randomized evaluations of the effectiveness of routinely administered HRQOL and needs
assessment tools.
Higginson, I. J., & Carr, A. J. (2001). Using quality of life measures in the clinical
setting. British Medical Journal, 322(7297), 1297-1300.
This article provides a simple overview of the challenges of using quality of life
measures in clinical practice. Eight potential uses for quality of life measures in aiding
routine clinical practice are described, followed by potential pitfalls. The authors stress that
54
QoL measures are not substitutes for measuring outcomes associated with the disease, but
rather supplements. Caution should be taken so as to avoid staff perceiving the use of QoL
measures as an alternative to communicating with the patients. Ethical considerations are
raised and barriers to the routine clinical use of such measures are discussed. Barriers include
concerns about cost, feasibility, and clinical relevance. In addition, the measures must be
reliable, valid, appropriate, responsive, simple to complete, easily interpreted, easily scored,
and provide useful data. Incorporating the use of QoL measures are described as potentially
useful because treatment decisions for the patient could be based on their preferences.
Recognizing that QoL is unique to each individual patient, there has been an
increased interest in developing individualized measures that allow patients to specify their
own responses. The article provides summary points at the end, followed a brief description
of various uses for QoL measures in clinical practice, and two checklist of questions to be
asked when assessing a QoL measure for use in clinical practice and for introducing a QoL
measure into clinical practice.
Huebner, E. S. (1994). Preliminary development and validation of a multidimensional
life satisfaction scale for children. Psychological Assessment, 6(2), 149-158.
The minimal number of studies conducted with children or adolescents assessing
positive subjective well-being (SWB) or life satisfaction in children is likely attributable in
part to a lack of measures possessing sound psychometric properties. A review of the
literature resulted in two measures of children’s life satisfaction. The Perceived Life
Satisfaction Scale (PLSS) is designed for adolescents and has limited psychometric
information available. The Students’ Life Satisfaction Scale (SLSS) is a brief seven-item
report instrument intended to be used with large populations. This scale has demonstrated a
unidimensional factor structure, but has acceptable psychometric properties for elementary
and secondary level students.
This study used the SLSS as a basis to develop a multidimensional life satisfaction
self-report scale (Multidimensional students’ life satisfaction scale – MSLSS) for use with
children in grades 3-8. Evidence from the study indicated that the MSLSS can assess
children’s general life satisfaction as well as satisfaction with family, friends, self, school,
and living environment. Total like satisfaction scores were unrelated to grade/age and gender
but were related to race. Adequate internal consistency was demonstrated for each of five
subscales and the total scale. Substantial correlations with criterion measures supported
concurrent validation of the MSLSS.
The author issues several warnings regarding use of the scale. He contends that
different ethnic groups need to be tested with this scale to increase the generalizability of the
findings.
Juniper, E. F., Howland, W. C., Roberts, N. B., Thompson, A. K., King, D. R., & Math,
B. (1998). Measuring quality of life in children with rhinoconjunctivitis. The Journal of
Allergy and Clinical Immunology, 101(2), 163-170.
A two phase study was implemented to first develop and then validate a measure of
QOL for children, the Paediatric Rhinoconjunctivitis Quality of Life Questionnaire
(PRQLQ), with seasonal allergic rhinoconjunctivitis (SAR). Development of the PRQLQ
took place in Southern Ontario. 34 children, ages 6 to 12 years, with SAR were enrolled and
55
asked to identify which of 48 previously generated items he or she experienced as a result of
SAR. For those positively identified, children were asked to report the extent to which it was
bothersome on a scale from 1-4. The proportion of children identifying each item positively
multiplied by the mean importance score for positively identified items resulted in the impact
score. Items with the highest impact score were included in the PRQLQ. 23 items in the
following five domains resulted: nose symptoms, eye symptoms, practical problems, other
symptoms, and activities.
The validation study consisted of 83 children (ages 6-12 years) in Austin, Texas. A
three week design was employed, with children having a clinical visit at enrollment and after
one and three weeks. The PRQLQ was completed by the child at each visit, asking them to
respond by reflecting upon the “past seven days”. For one week prior to the one and three
week visits, the children completed a symptom diary each morning and evening. At the final
three week visit, the child, parent, and physician each completed a global rating of change
questionnaire about changes in the child’s SAR since the previous visit. Strong evidence
provided support for the validity of the PRQLQ. Good cross-sectional validity was obtained
as well as good reliability. The questionnaire was responsive to change between clinical visits
and correlations between the PRQLQ and diary scores were close to predicted. Only time
specification was discussed as a problem in the study. Apparently some of the younger
children could not comprehend what “during the past seven days” meant. Parents were asked
to establish an event for the child that took place seven days prior so that they could use that
as a benchmark from which to respond. In essence, the authors concluded that this instrument
demonstrated good measurement properties that can be used with confidence in future
studies.
Mulhern, R. K., Fairclough, D. L., Friedman, A. G., & Leigh, L. D. (1990). Play
performance scale as an index of quality of life of children with cancer. Psychological
Assessment, 2(2), 149-155.
Considering that the biological cure rate for pediatric cancer is on the rise, the authors
decided that a valid index of the pediatric oncology patient’s quality of life is essential. This
index would potentially systematically track issues such as acute psychological problems of
cancer patients undergoing treatment, the toxicities of those treatments, and the residual
psychological problems of children previously treated for cancer. The authors indicated what
specifically would comprise a valid index of quality of life. Specifically, it should reflect the
child’s emotional adjustment, functional status, and physical status within a developmental
framework.
Using the Play Performance Scale for Children (PPSC), which was developed as a
parental rating of child behavior, the authors explored the reliability and validity of this scale
as a quality of life measure for pediatric oncology patients. The stated purpose of the scale, as
noted by Lansky and colleagues (Lansky et al., 1985) when designing it, was to quantify
changes in patients’ ability to function associated with cancer and its treatment by assessing
play activities. Play activities were conceptualized on a continuum from active to passive. A
previous validation study of the PPSC apparently had several limitations.
The reliability and validity of the Play Performance Scale for Children (PPSC) was
investigated among 120 children with cancer who were either hospitalized patients receiving
treatment, outpatients receiving treatment, or patients who had completed their treatment.
56
Interrater reliability, construct validity, and discriminant validity was examined. Interrater
reliability was assessed using independent ratings from the child’s physician, or physician
assistant, and a parent. Construct validity was evaluated by obtaining ratings from the PPSC
and two other sources, the Vineland Adaptive Behavior Scales and separate visual analog
scales. Finally, parents were subjected to a 20-30 minute interview using the survey form of
the Vineland Adaptive Behavior Scales (VABS).
Characteristics of the oncology patient groups were listed in table form. One parent of
each child and the child’s physician completed the PPSC and visual analog scales on the
same day. Rating criteria for the PPSC are presented in a table for the reader. The instructions
for completion of the PPSC are noted for the reader. Similarly, scoring criteria and
instructions for completion of the visual analog were presented. Statistical analyses are
described in detail.
Interrater reliability between parents and physicians of the PPSC was statistically
significant for each patient group and overall. Agreement was higher than that obtained on
the visual analog scales. The construct validity of the PPSC was better than the less
structured visual analog scales. The PPSC ratings were more heavily influenced by the
child’s physical status than by quality of life. The authors noted that this indicates that the
PPSC is not an adequate index of the patient’s overall quality of life. Furthermore, as the
PPSC does not include items that assess age-related social, cognitive/imaginative, and
affective components of developmental models of play, the authors assert that it is not a
comprehensive scale of play behavior. Limited support was illustrated for the discriminant
validity of the PPSC. It successfully distinguished between hospitalized patients and patients
out of therapy, but yielded an extremely low percentage rate of identifying outpatients.
Suggestions for modifications of this instrument are offered in order to enhance its
discriminant and construct validity. The study’s limitations are highlighted. A primary
setback of this study is the lack of an operational definition of quality of life, which the
authors attribute to the lack of a consistent definition in the literature. Without a working
definition, it is difficult to determine whether this construct has been assessed. Conveniently,
the authors conclude the article by outlining the strengths and weaknesses of the PPSC. A
reader could glance at the concluding paragraph and retrieve sufficient information to
determine whether or not s/he may want to employ this scale.
Rawlins, P. S., Rawlins, T. D., & Horne, M. (1990). Development of the family needs
assessment tool. Western Journal of Nursing Research, 12(2), 201-214.
The authors begin by highlighting the clear distinction between “perceived needs of
the family by the professional” and “identification of families’ needs as perceived by the
parents.” With this in mind, they developed the Family Needs Assessment Tool (FNAT).
Subjects were parents of children ranging in age from one month to 24 years old. The
children had from one to six chronic conditions. Those conditions most frequently reported
were cerebral palsy, cleft lip, diabetes, Down syndrome, hearing loss, heart condition,
seizures, speech-language defect, asthma, mental retardation, and orthopedic problems.
Parents expressed greatest needs for information in the areas of planning for their
child’s future, identifying appropriate community resources, understanding how the disease
effects growth and development, and how to improve communication among the child’s
health care providers. In addition, financial constraints of health care, waiting too long for
57
appointments, receiving answers to questions between appointments, and not receiving
answers to questions during office visits were voiced as concerns by the parents.
The authors contend that the FNAT appears to be a sensitive, reliable measure of the
special needs of the families of chronically ill children. At the time of publication, further
reliability and validity testing of the instrument was taking place in a number of states.
Tucker, C. L., Slifer, K. J., & Dahlquist, L. M. (2001). Reliability and validity of the
brief behavioral distress scale: A measure of children’s distress during invasive medical
procedures. Journal of Pediatric Psychology, 26(8), 513-523.
Attempting to measure preliminary reliability and validity of the Brief Behavioral
Distress Scale (BBDS), forty chronically ill children receiving repeated invasive medical
procedures were recruited. With the use of videotapes, 360 observations were collected on
the patients over two years. In relation to the Observation Scale of Behavioral Distress, which
is well established, the BBDS was found to be reliable and valid in regard to children’s
observable procedure-related distress.
.
58
Websites
Centre for Childhood Disability Research
www.fhs.mcmaster.ca/canchild/
The focus of this institution is research programs that concentrate on children and youth with
disabilities in the physical, developmental, and/or communicative domains. Programs
highlight the importance of the interrelationships between patients, families, communities,
and healthcare providers.
The Hospital for Sick Children (HSC)
www.sickkid.on.ca/kidscancope/default.asp
The HSC is one of the largest paediatric health science centers in the world. Patients,
families, and healthcare professionals are welcome to the site. Programs for patients and
families are extensive and listed by category. This site would be beneficial for those
individuals looking to remain updated on the latest research taking place with sick children.
National Hospice and Palliative Care Organization
www.nhpco.org
This organization is the largest nonprofit membership organization representing hospice and
palliative care programs and professionals in the United States. The organization is
committed to improving end-of-life care and strives to enhance the quality of life for people
dying in America and their loved ones.
Center to Advance Palliative Care; Under “Building a Program” click on “Needs
Assessment”
www.capcmssm.org
This provides comprehensive, detailed steps to perform a needs assessment for those
interested in developing a palliative care program.
Tool kit of Instruments
www.chcr.brown.edu/pcoc/toolkit/htm
Toolkit of instruments to measure end of life care; An annotated bibliography of existing
instruments to measure end-of-life care is provided; In addition, a guide is available for
assistance in choosing a measurement instrument; Newly validated instruments are also
included.
Quality of Life Assessment
www.qolid.org
59
This site is a guide for researchers who are trying to choose appropriate instruments for
assessment of QoL in medicine.
Palliative Care References
www.growthhouse.org/cgi/search.cgi
Provides an extensive list of additional palliative care references.
Chronic Illness, Children, and Health Education
www.faculty.fairfield.edu/fleitas/contkids.html
This website offers information for kids, teens, and adults with chronic illness. The graphics
would be appealing to children, however links are provided for older populations that are
coping with long-term illness. By entering the “kids” link, an introduction is provided
followed by several links that target issues sick children might have to deal with. Subjects
include, “To tell or not to tell,” “All about teasing,” “Bodies, minds, and mixups,” and
“Yarden and his imagination” among others.
CRCI: Center for Research on Chronic Illness
www.nursing.unc.edu/crci/
This is the official website of the Carolina School of Nursing Center for Research on Chronic
Illness. This center has been funded by the National Institute of Nursing Research (NIH)
since 1994 to promote excellence in nursing research. The website describes 18 federally
funded research projects that address a variety of topics from Cardiovascular Health in
Children and Youth, to Efficacy of Biofeedback to Treat Urinary Incontinence in Women, to
other issues such as Gender, Migration, and HIV Risks Among Mexicans, and Family
Experience of Genetic Testing: Ethical Dimensions. In addition, a pilot study program is
described, as well as doctoral fellowships, recent publications, and links to investigate the
services this center strives to provide to advance research on preventing and managing
chronic illness.
When Someone You Know Has a Chronic Illness
www.kidshealth.org/kid/feeling/thought/someone_chronic.html
This is an excellent website intended for educating children on chronic illness and common
experiences that might be endured by sick children. Topics for exploration include “Dealing
with Feelings,” “Staying Healthy,” “Everyday Illnesses and Injuries,” My Body,” “Growing
Up,” “Kids’ Talk,” “People, Places, and Things That Help Me,” “Watch Out,” “The Game
Closet,” “Kids’ Health Problems,” “WORD! A Glossary of Medical Terms,” and “Health
Problems of Grown-ups.” The WORD Glossary is quite exhaustive when considering the
target audience is children. “Dealing with Feelings” addresses feelings that children might
experience not only if s/he is the ill individual, but also those feelings that surface when a
sibling or parent becomes chronically ill.
60
Mental Health Touches Everyone
www.athealth.com/Consumer/newsletter/FPN_4_5.html
Designed for either the consumer or practitioner, anyone can subscribe to this online
community newsletter for free. Children and chronic illness is one subdivision of the
newsletter. Current topics under this heading, for example, are “Unmet needs in children with
chronic illness,” “Promoting resilience in youth with chronic illness,” “Tools for kids who
cope with chronic conditions,” “Guide for parents with a child who has cancer,” “Diagnosis
and treatment of pediatric depression,” and “Treatment of families with chronically ill family
members.”
CANCERNET
www.cancernet.nci.nih.gov/
Information is available regarding assessment and diagnosis of chronic illness, as well as
intervention and management.
National Cancer Institute
www.cancer.gov
This is the website of the National Cancer Institute (NCI), the Federal government’s principal
agency for cancer research. Patients, families, and healthcare professionals can access a
breadth of information on cancer. The site is easily navigated and broad content includes:
Cancer information, clinical trials, statistics, research programs, and research funding.
61