Family Quality of Life:

Annotated Bibliography

Jennifer A. Burhart, BA, Ed.M, PhD student

Counseling Educational School of Psychology

StateUniversity of New York at Buffalo

Jim Donnelly, Assistant Professor

Counseling Educational School of Psychology

StateUniversity 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.

Table of Contents

Abstract…………………………………………………………………………………….1

Books………………………………………………………………………………………..2

Empirical Literature Reviews…………………………………………………………….4

Theoretical Literature…………………………………………………………………….37

Measurement Literature…………………………………………………………………....…………….51

Websites……………………………………………………………………………………..58

1

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.
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 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 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 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.

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 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.

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 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.