Family Caregiving Across the Lifespan
Publication Year: 1994
Examining caregiving issues from a multigenerational, family life cycle perspective, this volume deals with the broad spectrum of chronic illnesses that necessitate family caregiving throughout the lifespan and discusses responses to these challenges by both caregiving families and caregiving systems. Part One addresses the caregiving paradigm and the relationship of family caregiving research to family life studies. Part Two examines conceptual aspects of caregiving, ranging from the expansion of the caregiving paradigm, caregiving processes and tasks, to the positive aspects of caregiving. Part Three emphasizes how family caregivers are affected by the connection (or lack of it) to macro-level systems.
- Front Matter
- Back Matter
- Subject Index
Part I: Paradigms for Caregiving
- Chapter 1: Developmental Challenges and Family Caregiving: Bridging Concepts and Research
- Chapter 2: Someone to Watch over Me: Family Responsibilities and Their Realization across Family Lives
- Chapter 3: Altruism Through the Life Course
- Chapter 4: Optimal Use of Formal and Informal Systems over the Life Course
Part II: Illness and Life Stage: Challenges for Caregiving
- Chapter 5: Caregiving and Children
- Chapter 6: Caregivers of Persons Living with AIDS
- Chapter 7: Predictors of Caregiver Burden among Support Group Members of Persons with Chronic Mental Illness
- Chapter 8: Psychoeducational Programs: From Blaming to Caring
- Chapter 9: The Home Care of a Patient with Cancer: The Midlife Crisis
- Chapter 10: Caregiving Issues after a Heart Attack: Perspectives on Elderly Patients and Their Families
Part III: The Interface between Formal Care Providers and Caregiving Families
- Chapter 11: Care at Home: Family Caregivers and Home Care Workers
- Chapter 12: The Caregiver as the Hidden Patient: Challenges for Medical Practice
- Chapter 13: Caregiving Issues in Families of Children with Chronic Medical Conditions
- Chapter 14: Relationships between the Frail Elderly's Informal and Formal Helpers
Family Caregiver Applications Series, Volume 4[Page ii]
David E. Biegel, Case Western Reserve University Richard Schulz, University of Pittsburgh
Advisory Board Members
- Oscar A. Barbarin, Ph.D., University of Michigan
- Delores Gallagher-Thompson, Ph.D., Stanford University
- Barbara Given, R.N., Ph.D., Michigan State University
- Lisa Gwyther, M.S.W., Duke University
- Agnes B. Hatfield, Ph.D., University of Maryland
- Eva Kahana, Ph.D., Case Western Reserve University
- Barry Lebowitz, Ph.D., National Institute of Mental Health
- William R. McFarlane, M.D., New York State Psychiatric Institute
- Spero M. Manson, Ph.D., University of Colorado
- Rhonda Montgomery, Ph.D., Wayne State University
- Linda S. Noelker, Ph.D., The Benjamin Rose Institute
- Peter V. Rabins, M. D., Johns Hopkins University
- Esther Sales, Ph.D., University of Pittsburgh
- May L. Wykle, Ph.D., FAAN, Case Western State University
Volumes in This Series:
- Family Caregiving in Chronic Illness: Alzheimer's Disease, Cancer, Heart Disease, Mental Illness, and Stroke
David E. Biegel, Esther Sales, and Richard Schulz
- Grandmothers as Caregivers: Raising Children of the Crack Cocaine Epidemic
Meredith Minkler and Kathleen M. Roe
- Balancing Work and Caregiving for Children, Adults, and Elders
Margaret B. Neal, Nancy J. Chapman, Berit Ingersoll-Dayton, and Arthur C. Emlen
- Family Caregiving Across the Lifespan
edited by Eva Kahana, David E. Biegel, and May L. Wykle
Copyright © 1994 by Sage Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval systems, without permission in writing from the publisher.
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Library of Congress Cataloging-in-Publication Data
Main entry under title:
Family caregiving across the lifespan / edited by Eva Kahana, David E. Biegel, May L. Wykle.
p. cm. — (Family caregiver applications series; v. 4)
“Published in cooperation with the Center for Practice Innovations, Mandel School of Applied Social Sciences, Case Western Reserve University.”
Includes bibliographical references and index.
ISBN 0-8039-4430-6. — ISBN 0-8039- 4431-4 (pbk.)
1. Chronically ill—Care. 2. Caregivers. I. Kahana, Eva. II. Biegel, David E. III. Wykle, May L. IV. Series.
97 98 99 00 01 02 03 8 7 6 5 4 3 2
Sage Production Editor: Diane S. Foster
[Page v]This book is dedicated to the younger and older members of our families who have made us appreciate the uplifts as well as the burdens of caregiving in chronic illness[Page vi]
The idea for this volume grew out of an interdisciplinary conference, entitled “Family Caregiving Across the Lifespan,” that was cosponsored by the Mandel School of Applied Social Sciences and the University Center of Aging and Health, Case Western Reserve University. The conference, which was funded in part by the George Gund Foundation, was cochaired by Drs. Kathleen J. Farkas and May L. Wykle and was held at Case Western Reserve University in the fall of 1990. Seven of the chapters in this volume are revisions and expansions of papers that were presented at that conference, and the remaining seven chapters are papers invited by the editors on topics that address the overall themes of the volume.
This project would not have been possible without the expertise, commitment, and dedication of the contributors to this volume. They portrayed good humor and patience throughout the process of completing this manuscript.
The development of this volume benefited from the combined assistance of a number of individuals. Judy Simpson, senior program officer at the George Gund Foundation, helped secure the financial resources necessary to make this project a reality. Marquita Flemming, editor at Sage Publications, provided continued support and encouragement for our work. We are deeply grateful to Tammy Lorkovich and Neale Chumbler from the Department of Sociology and to Patricia Kilrain, Altaf Husain, and Kris Keffer from the Mandel School of Applied Social Sciences, who provided assistance with the preparation of this manuscript. We also appreciate the efforts of Linda Wykoff, who assisted in editing the manuscript.[Page x]
Series Editor's Foreword[Page xi]
Most of us think of caregiving in relation to frail and disabled elderly persons. A prototypical case is the elderly wife caring for her husband with Alzheimer's disease, or the middle-aged daughter caring for her mother who no longer is able to navigate through life on her own. This book dispels this narrow view of caregiving and shows us that caregiving occurs at all ages and for a broad range of health conditions. Disability, dependence, and the need for help from those around us have no age limits.
Expanding the caregiving paradigm is the central theme of this book. The editors of this volume have brought together leading researchers from numerous disciplines including sociology, psychology, nursing, public health, and social work to broaden our view of caregiving at several levels. The conceptual framework for caregiving is enlarged to include the broader social system within which individual caregivers operate. The temporal context for caregiving is expanded to include chronic illnesses that occur throughout the life course, such as AIDS, cancer, and heart disease, and caregiving tasks and challenges are examined from a normative life course perspective.
Finding coherence in so much diversity is an accomplishment unachievable by any individual. It is therefore no accident that this volume has three editors. Eva Kahana brings to this effort her extensive experience in the sociology of aging and her understanding of life course development. David Biegel has been a major contributor to research on the interface between individual caregivers and formal support systems, and May Wykle long has been recognized as a national expert on cultural variations in the caregiving experience. Working closely together, this [Page xii]team has created a volume that expands the discourse on caregiving to many new domains and defines the caregiving research agenda for the years ahead.Series Coeditor,
Introduction[Page xiii]Overview of the Volume
Social scientists as well as human service professionals long have been fascinated by the human interactions involved in providing assistance and caring for family members with chronic illness. The study of caregiving has assumed an important role in family studies and among scholars involved in the study of stress and coping. In the practice arena, the family context of chronic illness comprises a major underpinning of the field of family medicine, a growing specialty in primary care. Human service professionals ranging from social workers to nurses and clinical psychologists have developed therapeutic interventions to address needs of families caring for persons with chronic illness. Increasing public debate and media attention also have been directed at long-term care options and financing of home care, including innovative adjuncts to family caregiving such as hospice and respite care.
Several converging social trends have resulted in the increasing importance of studies of caregiving across the life span and across diverse health problems. The social significance and potential burden of caring for family members with chronic illness represent a normative demand on families (Zarit, Pearlin, & Schaie, 1993). Increased life expectancy has resulted in greater prevalence of Alzheimer's disease and other chronic illnesses associated with late life. Advances in medical technology, coupled with DRG financing of hospital stays, also have resulted in increasing use of home care rather than acute hospitalization for cancer and other illnesses requiring relatively high-technology care. In addition, the growing epidemic of the Acquired Immune Deficiency Syndrome (AIDS) has posed challenges for caregiving to a much younger group than those who in the past typically were cared for in traditional family settings. The deinstitutionalization of persons with [Page xiv]mental illness has produced greater requirements for home care and other informal services for individuals with mental illness and developmental disabilities. Recent advances in entitlements and legal protection of individuals who are physically challenged also have opened up new horizons for functioning and empowerment for this group, bringing with these new horizons greater needs for support by informal and formal caregivers.
One result of this growing interest in caregiving has been a large increase in the caregiving literature in recent years. For example, between 1987 and 1991, there was a 41% increase in the number of journal articles concerning caregiving abstracted in Psychological Abstracts, a 200% increase in caregiving articles abstracted in Sociological Abstracts, and an increase of 307% in caregiving articles abstracted in Medline while the total number of articles abstracted in these databases increased by only 9% or less per database.
The response to this proliferation of caregiving literature has led to debate among scholars about the merits of further investment of scientific resources in the study of caregiving with the belief by some that we do not need further studies to document or describe caregiver stress (Zarit & Toseland, 1989). It has been argued that caregiving may be an overstudied phenomenon that is not likely to lead to many new insights about the social world or illness or the psychosocial interior of the family.
Upon closer scrutiny of the caregiving literature, however, it becomes clear that only one small corner of this complex paradigm has received most of the attention by researchers: burdens of caregivers of physically frail elders or elders with Alzheimer's disease. At the same time, much less is known about the nature, components, antecedents, and sequelae of caregiving involving other age groups and diverse illness situations. Previous reviews of caregiving research have identified a number of significant limitations in both conceptualization and method of caregiving research. Conceptual limitations relate to a general lack of theoretical grounding and a narrow perspective typically limited to focus on ill effects on designated family caregivers of patients suffering from a specific disease. The need for examination of the caregiving experience across as well as within particular illnesses has been particularly stressed (Biegel, Sales, & Schulz, 1991). In terms of methodological limitations, the literature is characterized by cross-sectional studies that lack comparison groups and shared instruments and that usually are based on convenience samples of caregivers, often comprising clinical populations.
[Page xv]Recently there has been a call to broaden the conceptual framework of caregiving research to include a wider range of variables that affect caregiving (Chiriboga, Weiler, & Neilson, 1988–1989; Pearlin, Mullan, Semple, & Skaff, 1990). Pearlin and colleagues' work in particular, which George (1990) calls a tour de force, also emphasizes the need for further examinations of the process and context of caregiving. Significant gaps in knowledge exist in regard to the contextual perspectives in caregiving (Burton & Sorensen, 1993). Caregiving generally has been explored in terms of individual care providers without regard to the broader social system within which caregiving interactions are embedded.
This volume aims to consider the broad spectrum of chronic illnesses that necessitate family caregiving throughout the lifespan and to discuss responses to these challenges by both caregiving families and caregiving systems. In doing so, we hope to move the caregiving paradigm beyond the narrow orientation to understanding that arises when the focus is only on specific ailments, such as Alzheimer's disease; on specific age groups, such as the very old or very young; or on specific individuals (i.e., the caregiver dyad—caregiver and/or care receiver). This book is predicated on the belief that much can be learned about caregiving by understanding its broader social and temporal contexts. At the same time, the study of caregiving also is seen as a valuable avenue for exploring broader theoretical concerns of behavioral and social sciences, including human development, social exchange, and the impact of chronic stress on psychological well-being.
The interplay between broader society and the personal caregiving context of individuals generally has been considered in terms of formal and informal caregiving systems. However, ecological approaches to caregiving permit us to consider new and previously neglected areas of that interface. Thus, for example, definitions of the family can be broadened to include non-kin significant others such as partners and even community volunteers caring for AIDS patients (Brennan & Moore, this volume). The physician's role as an important part of the caregiving context may be explored (Medalie, this volume). Furthermore, society's role may be analyzed as it directly affects needs and options of both caregivers and care receivers (Aldous, this volume). Society can influence relationships between caregivers and care receivers by the stigma attached to certain health problems such as AIDS or Alzheimer's disease. To the extent that these conditions are stigmatized, those afflicted will have diminished access to both formal and informal caregivers, and [Page xvi]caregivers may experience greater burden. Laws recently enacted through the Americans with Disabilities Act serve to provide greater access as well as protection against discrimination for persons with disabilities, thereby easing burdens of caregivers and opening up options for independent living for persons with physical or mental impairments.
Addressing limitations inherent in the extant literature poses difficult challenges to scholars in the field. Nevertheless, each limitation also translates into need for further work in this field and contradicts the view that caregiving is an overresearched field. This book represents one effort in the direction of clarifying and extending conceptual approaches in caregiving research. It is thus predicated on the view that clarification of concepts must precede significant advances in research.
The expanded caregiver paradigm (Kahana, Kahana, Johnson, Hammond, & Kercher, this volume) addresses several of the most basic questions relevant to caregiving—the who, when, what, how, and why of caregiving. First, who are the important agents of caregiving? This question might be characterized as the spatial axis of caregiving. The definition of the caregiver as an individual or as a group, as part of a formal or informal system reflects one of the central themes in caregiving research and a central determinant of relevant processes and outcomes of caregiving.
Specifically, contributions to this book serve to expand the caregiving paradigm by broadening the focus of inquiry to include both members of the caregiving dyad and significant nonfamily caregivers. In addition, the social context in which caregiving is embedded is addressed by focus on the family and the broader social system. In contrast to studies of caregiving that focus only on singular actors in the caregiving paradigm, such as the major family caregiver, an entire section of this volume is devoted to discussions of the interface between informal and formal caregivers and society at large as they provide the context to family caregiving.
A second central question addresses when caregiving is likely to involve different challenges and elicit different responses for both the caregivers and the care receivers. The paradigm is expanded temporally through consideration of age and life stage of both the caregiver and the care receiver. Thus, caregiving may be placed in a life course perspective in which both age- and stage-specific and more universal dimensions and consequences of caregiving may be identified (Birkel, 1991). The effects of chronic illness on families, including the challenges posed by caregiving, may best be understood if placed in the context of [Page xvii]normal developmental tasks faced by individual members of the family and the family unit (Rustad, 1990). Although a life course perspective represents the most common application of the temporal perspective, considerations of temporal dimensions also may include stages of illness, family life stage, and historical and cohort influences. Several of the contributors to this volume assume a developmental approach to understanding family caregiving, whereas others focus on unique characteristics and consequences of caregiving during a specific life stage.
The third central question relevant to the caregiving paradigm asks about the what ard how of caregiving. What actually constitutes the process of caregiving? What transactions take place in the course of caregiving exchanges, and what are the consequences of caregiving transactions? Expanding the caregiving paradigm along a transactional axis involves recognizing that caregiving is part of a broad range of responses that individuals may make in the context of family and interpersonal relationships. Specifically, with regard to perceived needs of others, responses may range from provision of assistance to indifference and neglect and even harm-inducing or abusive behaviors (Birkel, 1991). The emergent social support literature with its recent focus on both care withholding and supportive behaviors provides a useful conceptual framework for understanding the transactions or processes involved in alternative caregiving relationships.
The value of providing support to caregivers has been underscored in the work of Zarit, Reever, and Bach-Peterson in their research on caregivers of patients with dementia (1980). Beyond specifying the types of social provisions involved in caregiving there is great need and much room for elaborating on the question of what types of processes or transactions occur. Several of the chapters in this volume represent progress in addressing caregiving processes. In particular the work of Given and Given highlights the transactions involved in helping family members cope with the multiple challenges of living with cancer.
The question of what are the outcomes or consequences of giving care for the caregiver represents the major concern of prior caregiving research. In addition to addressing processes of caregiving, an expanded caregiving paradigm also involves a broader view of the consequences of caregiving. Rather than limiting considerations of caregiving outcomes only to explanation of negative consequences for caregivers, the expanded paradigm explored in this volume also addresses potential benefits of caregiving. The positive values or potential benefits of caregiving have been noted by Horowitz (1985). Such benefits have [Page xviii]been conceptualized as representing “uplifts” that may counteract the stresses posed through “hassles” of caregiving (Kinney & Stephens, 1989). Satisfaction with caregiving roles also has been reported by family caregivers to stroke patients (Silliman, Earp, Fletcher, & Wagner, 1988). In this volume, the chapter by Young and Kahana looks at dyadic outcomes that range from adverse sequelae for both caregivers and care receivers, to situations in which one party benefits while the other suffers, and finally to mutually beneficial outcomes for caregivers and care receivers.
In addition to questions related to the who, when, how, and what of caregiving, a relatively neglected but important background consideration involves the why of caregiving. What are the motivational bases for getting involved in the provision of costly assistance to others? The term caregiving suggests a positive or nurturant response to perceived or real needs of others. It thus reflects a willingness to acknowledge unmet needs and respond to them in a manner helpful to those in need albeit at a cost to the provider of assistance (Birkel, 1991). Students of caregiving have been particularly concerned with understanding these costs to the caregiver with caregiving paradigms largely directed toward understanding the stressful impact of caregiving and the psychosocial and physical impacts of care provision (Zarit & Toseland, 1989).
Are there unique decisions involved in coming to the aid of others despite potentially high costs to the caregiver? Some students of caregiving argue that rather than involving a unique set of interactions caregiving may represent a more intensive form of a prior pattern of help giving in families (Walker & Pratt, 1991). Others point to the powerful influence of decisions to become caregivers. An innovative and comprehensive conceptualization of the why of family caregiving in a developmental context is provided in this volume in Midlarsky's contribution.
This book also represents a response to the need for breaking down disciplinary barriers and narrow, age-limited orientations to understanding caregiving. Caregiving has been a subject of inquiry among sociologists, social workers, psychologists, and nurses. Each of these disciplines approaches issues of caregiving with its own set of conceptual frameworks, methodological preferences, and terminology. Often these disciplinary frameworks come to comprise barriers to communication and even barriers to motivation to understand progress in other fields.
As different age groups and different disciplinary groups increasingly compete for research and (even clinical) funding dollars, incentives are created for exaggerating differences and deemphasizing similarities in [Page xix]caregiving issues across the life span. Yet true scientific understanding can be derived only if we appreciate both commonalities and differences in challenges posed by, and adaptations made in response to, the needs of persons with chronic illness.
Consideration of caregiving issues across a wide variety of ages, life and family stages, and illness situations allows for better understanding both of general processes involved in caregiving and of unique aspects of caregiving situations. Furthermore, dissemination of extant knowledge across the lifespan can diminish duplication studies and lead to a more cumulative knowledge base.Organization and Content of the Volume
As indicated above, despite the large and increasing number of publications pertaining to family caregiving in recent years, there are many remaining gaps in knowledge. No single volume can provide a comprehensive analysis of family caregiving. The focus of this interdisciplinary volume is to address conceptual issues in caregiving. Thus, the caregiving paradigm is expanded in time and space by focusing on caregiving in the context of the family life cycle. Unique adaptive tasks and common challenges faced by caregivers to such populations as chronically ill children, mentally ill young adults, adult AIDS patients, and chronically ill elders are discussed.
The volume is divided into three parts. Part I, “Paradigms for Caregiving,” presents four chapters that address the caregiving paradigm and the relationship of family caregiving research to family life studies. In Chapter 1, Kahana, Kahana, Johnson, Hammond, and Kercher attempt to integrate alternative conceptual approaches to caregiving through exploration of developmental, dyadic, and system-based perspectives. The chapter offers an interdisciplinary perspective that incorporates developmental psychological approaches to understanding challenges to personality development of individual caregivers and care receivers. It uses sociological perspectives to help understand caregiving families at different points in the life cycle. Kahana and colleagues present multidimensional views of the temporal aspects of caregiving through both an examination of the life stages of individual caregivers and care receivers and a discussion of family life cycle stages. The social context of caregiving is discussed through a focus on caregiving groups or systems ranging from the family to society at large.
[Page xx]Continuing the theme of family life cycles, in Chapter 2 Aldous provides an in-depth discussion of the family life cycle literature and, in so doing, places caregiving research within the context of the broader literature on families. She discusses social and economic changes in society that have impacted on families and draws implications of these changes for family caregiving. Five stages of family life are discussed: formation, child rearing, child leaving home, middle years, and final years. For each stage of the lifespan, Aldous compares and contrasts important issues and caregiving activities facing families and places our understanding of caregiving in a broader societal perspective. Gaps in the caregiving literature are noted, especially the unevenness of caregiving research, with the caregiving literature about young families being particularly sparse.
In Chapter 3 Midlarsky bridges two related literatures with common themes, altruism and caregiving, that are seldom discussed in the same context. She focuses on altruism as a major theoretical framework relevant to interpersonal motivations or orientations underlying helping behavior in general and caregiving in particular. The development of altruism throughout the life span is explored, particularly as it relates to caregiving in chronic illness situations. In undertaking this task, Midlarsky places particularistic aspects of caregiving research in the more global theoretical context of helping and motives for helping. The chapter addresses the issue of why people help despite the often high personal costs of caregiving and calls attention to relevant related concepts, such as nurturance, that traditionally are not considered in the caregiving literature. The chapter also reviews evidence from developmental and social psychology that can inform our conceptualization of caregiving.
In the fourth and final chapter in Part I, Litwak, Jessop, and Moulton present an original theory of caregiving that melds life-course considerations with a task-specific theory of social support. The chapter's focus on the relationship between informal and formal care helps set the stage for later examinations of this topic, which are featured in Part III of this volume. In this chapter, Litwak and colleagues expand Litwak's task-specific theory, which originally was developed in work with the elderly, and then they apply it to different stages of the lifespan from early childhood through old age. The chapter discusses the interrelationship of informal and formal caregiving and the life-course factors that affect one's choosing of a formal resource over an informal one. Such factors include physical maturation; incest and privacy norms; [Page xxi]parenting norms; gender role reversal; parent/child role reversals; and grandparent, female, sibling, and spousal overloads. The authors discuss the fact that the pressures for using formal organizations to substitute for informal ones are very different at different stages of the lifespan. The chapter discusses the need (a) for more research to empirically establish at which stage of the life course there will be more pressure to use formal services and (b) for research that is needed to examine which stresses at each life stage are the most important in affecting use of services.
Part II, “Illness and Life Stage: Challenges for Caregiving,” contains six empirical chapters that continue discussion of conceptual aspects of caregiving, ranging from the expansion of the caregiving paradigm, caregiving processes and tasks, to the positive aspects of caregiving. The chapters encompass caregiving with children, young adults, the middle-aged, and the elderly. A range of chronic illnesses is discussed as well, including AIDS, mental illness, cancer, and heart disease.
Chapter 5 addresses a care-receiving population that has received less attention than others, namely, caregiving with young children. Patterson and Leonard present a longitudinal, qualitative study of families caring for medically fragile children. The framework for caregiving includes the full family system: the sibling as well as the marital unit. Distinctions of caregiving impact are based on gender roles of mothers and fathers. The chapter identifies critical themes of strains related to home care of children with chronic illness: losses (privacy and spontaneity), problems with services (people and equipment), care and parenting strains, and added family strains. Findings from this study indicate that more than one half of the caregiving parents were seriously distressed, and that caregiving had positive effects on some siblings and negative effects on others. This chapter moves toward recognizing diversity in responses to caregiving demands and thus paves the way for future research that can distinguish characteristics of caregivers who suffer ill effects from those who thrive despite their caregiving duties.
In Chapter 6, Brennan and Moore present a study of caregivers of persons living with AIDS, broadening the definition of what is meant by the term family caregiver. The nature of AIDS is such that family caregivers are a diverse group, ranging from the traditional (parents providing care to adult children) to nontraditional or emergent family types where nonrelated persons (lovers and/or close friends) provide care. Both caregivers and care receivers discussed in this study cover almost the full spectrum of the life course. The disease examined in this [Page xxii]chapter, AIDS, is unique in being life-threatening as well as stigmatizing and having an unpredictable but inevitable trajectory of decline. The chapter highlights the adaptive tasks and problems of caregiver/care receiver dyads who have different relationships, such as elderly parents who must cope with the dual stigma of the lifestyle of their offspring and the devastating effects of the illness. The chapter considers stages in the caregiving process that correspond to illness-adaptive tasks and calls attention to potential caregiving situations in which there is double jeopardy as both caregivers and care receivers may be ill.
All too often, caregiving research with one chronic illness does not build on related research with other illnesses. In Chapter 7, Biegel, Song, and Chakravarthy make use of a theoretical framework adapted from research with caregivers of Alzheimer's disease patients to examine burdens of caregivers of persons with chronic mental illness. After reviewing the literature concerning the extent, and predictors, of caregiver burden, the authors present findings from their cross-sectional study of middle-class caregivers who are support group members. The study examines the simultaneous effect of multiple independent variables upon caregiver burden. Findings indicate that client behavioral problems, poor caregiver health, and inadequate social support were important predictors of caregiver distress. The authors call for a reorientation in the way that mental health professionals involve family members in the treatment of persons with chronic mental illness.
Continuing the discussion of family caregivers of persons with mental illness, this time from an intervention perspective, in Chapter 8 Kane discusses psychoeducational interventions for family caregivers of this population. The chapter presents a systematic review and analysis of these interventions and demonstrates the important roles that they can play in assisting family caregivers. The chapter discusses changes in perceptions of family caregivers with this population over time. Too often in the past, family caregivers of persons with mental illness have been blamed as causal agents of the disease. Such blaming has added to the usual burdens of caregiving and has affected caregivers' relationships with mental health professionals. Kane's historical perspective on this issue represents a continuing effort in the literature to correct past abuses.
Much of the caregiving literature has examined caregiving outcomes such as caregiver burden, physical illness, or depression. There has been much less examination of the process of caregiving itself. Given and [Page xxiii]Given's empirical study of caregivers of middle-aged adults with cancer, presented in Chapter 9, sheds much light on the nature of caregiving with this population. The authors discuss the family disruption that takes places when illness strikes during midlife and the unique problems of caregivers and care receivers who face special role demands during this lifespan stage. Further, the authors demonstrate that caregiving tasks and processes are shaped by a number of variables including the site of the cancer, the stage of the disease, and the treatment modalities. In fact, the treatment itself is considered as a source of stress in addition to the illness. In line with the emergent interest in the concerns of care receivers, the chapter provides a focus on patient needs and patient roles. The chapter moves toward providing an integrative model of cancer care across formal and informal systems and patient outcomes.
The final chapter in Part II, by Young and Kahana, discusses caregiving issues with persons who have had a heart attack. This chapter advances dyadic perspectives of caregiving by the presentation of a conceptual model for understanding outcomes in heart disease; the model is tested in an empirical study of older heart attack victims and their families. Four alternative outcomes, both symmetrical and asymmetrical, are provided: both caregiver and care-receiver thrive, both caregiver and care receiver have negative outcomes, the caregiver has a negative outcome but the care receiver thrives, or the care receiver has a negative outcome but the caregiver prospers. Findings indicate that the patterns of dyadic mental health outcomes are diverse, with health of the patient and the amount of caregiving assistance being important predictors of outcome across patient-caregiver dyads.
The third Part of the volume, “The Interface Between Formal Care Providers and Caregiving Families,” emphasizes that caregiving does not occur in a vacuum and that family caregivers are very much affected by their connection, or lack of connection, with macrolevel systems. In Chapter 11, Fischer and Eustis add to our understanding of the nature of the relationship between informal and formal caregiving through a qualitative empirical examination of an understudied area, the relationship between family caregiving and paid home care. The chapter examines caregiving with adults ranging in age from 27 to 99 years who have a variety of disabilities. The authors indicate that interactions between paid caregivers and family caregivers can be conceptualized into three types: alliance, conflict, and separate worlds. They find that Litwak's [Page xxiv]substitution theory only partially explains paid caregiving because there is so much informality in the formal role of paid caregivers. Findings demonstrate a number of similarities between paid home-care workers and family caregivers in relation to the scope and nature of the work, with paid caregivers often performing above and beyond the call of duty. In fact, sometimes paid caregivers become quasi-family members. However, there are also differences: Paid home-care workers lack the emotional complexity and legitimacy of family relationships. The authors describe the roles of paid helpers and family caregivers as interlocking, each providing what the other does not. Although services for the clients studied were not fully adequate, the authors indicated that most clients make do.
Studies indicate that families place high levels of trust in their family physician. Yet the relationship of the family physician to family caregiving has been little examined. In Chapter 12, Medalie reviews alternative medical practice models and their implications for assisting family caregivers. He shows how physicians, who are Part of the formal service delivery system, can assist caregivers by presenting a comprehensive model of patient-caregiver-physician interactions. The chapter uses an ideographic, case study approach to provide insights into physical health risks to caregivers with their potential of becoming hidden patients. A principal audience of this chapter is physicians, with the author advocating that physicians can play an important gatekeeping role in caregiving. Medalie's work, however, also can help nonphysician caregivers become aware of the important roles physicians can play as caregiving allies.
In Chapter 13, Kazak and Christakis-Zerr present a systems-oriented approach, anchored in social ecology and systems theory, to caregiving with children with diverse chronic medical conditions. The authors' approach to chronic illness suggests that commonalities related to illness exist at all stages of the lifespan. They discuss the distinct nature and commonalities of parenting and caregiving. The authors believe that to understand caregiving outcomes from a family perspective requires an understanding of the interconnectedness of individual, family, and social institutions. The relevant systems that the authors discuss are organized into categories of microsystems, mesosystems, exosystems, and macrosystems.
In the final chapter of the volume, Noelker and Bass propose the need for an integrative model of the relationship between informal and [Page xxv]formal caregiving. The strengths and weaknesses of three existing informal-formal relationship models are presented—hierarchical compensatory model, task-specific model, and supplementation model. For each model, the authors present a conceptual overview, followed by a discussion of empirical support for the model. Limitations of existing models include a focus on only particular types of help, static orientation based on a single factor influencing informal-formal care over time, lack of inclusion of contingencies, narrow range of informal and formal helpers, and little systematic attention to use of services by informal caregivers. The authors then discuss their own research, which proposes a test of an integrative model that addresses these limitations.References1991). Family caregiving in chronic illness: Alzheimer's disease, cancer, heart disease, mental illness and stroke. Newbury Park, CA: Sage., , & (1991). A lifespan perspective on caregiving. In D. G.Unger & D. R.Powell (Eds.), Families as nurturing systems (pp. 99–108). Binghamton, NY: Haworth.(1993). Temporal context and the caregiver role: Perspectives from ethnographic studies of multigenerational African-American families. In S. H.Zarit, L. I.Pearlin, & K. W.Schaie (Eds.), Caregiving systems: Informal and formal helpers. Hillsdale, NJ: Lawrence Erlbaum., & (1988–1989). The stress of caregivers. The Journal of Applied Social Sciences, 13(1), 118–141., , & (1990). Caregiver stress studies: There really is more to learn. The Gerontologist, 30, 580–581. http://dx.doi.org/10.1093/geront/30.5.580(1985). Sons and daughters as caregivers to older parents: Differences in role performance and consequences. The Gerontologist, 25, 612–617. http://dx.doi.org/10.1093/geront/25.6.612(1989). Hassles and uplifts of giving care to a family member with dementia. Psychology and Aging, 4, 402–408. http://dx.doi.org/10.1037/0882-79126.96.36.1992, & (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–591. http://dx.doi.org/10.1093/geront/30.5.583, , , & (1984). Family adjustment to chronic illness and disability in mid-life. In M.G.EisenbergL. C.Suthin, M. A.Jansen (Eds.), Chronic illness and disability through the lifespan: Effects on self and family. New York, NY: Springer.(1988). Stroke: The perspective of family caregivers. Journal of Applied Gerontology, 6, 363–371. http://dx.doi.org/10.1177/073346488700600401, , , & (1991). Daughters' help to mothers: Intergenerational aid versus caregiving. Journal of Marriage and the Family, 53, 3–12. http://dx.doi.org/10.2307/353129, & ([Page xxvi]Zarit, S. H., Pearlin, L. I., & Schaie, K. W. (Eds.). (1993). Caregiving systems: Informal and formal helpers. Hillsdale, NJ: Lawrence Erlbaum.1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655. http://dx.doi.org/10.1093/geront/20.6.649, , & (1989). Current future direction in family caregiving research. The Gerontologist, 29, 481–483. http://dx.doi.org/10.1093/geront/29.4.481, & (
This volume has focused on expanding the caregiving paradigm and enhancing conceptual understandings through greater appreciation of context. What have we learned through this exploration and what future directions do we need to look toward?
It may be fair to argue that caregiving research has had an uneven course of development with some areas of research receiving a great deal of attention and others being relatively neglected (Zarit, 1989). At the same time it is important to note that those areas that have received the most research attention, such as caring for aged patients with Alzheimer's disease, also have made the most strides in conceptual and methodological development. They can thus inform newer and developing areas of interest. In time, new research areas also tend to generate their own characteristic research traditions, in terms of both conceptual and methodological orientations.
The present volume has sampled alternative conceptual and research traditions that characterize caregiving research focusing on different points in the life course. The diverse orientations represented in the contributions to this volume suggest a need for greater communication among the diverse constituencies of caregiving. Our understanding can be enriched by perspectives of those involved in the caregiving process at different points during the life course and in different illness situations. In addition, the field can be enriched by perspectives of researchers and practitioners from different disciplines.
There are multiple benefits to expansion of the caregiving paradigm. Articulation of a broader paradigm results in moving beyond unidimensional and molecular approaches to caregiving. More comprehensive and holistic approaches to caregiving are likely to enhance the heuristic value of research in this area. Thus where the care receiver suffers from a designated illness, such as mental illness, other conditions [Page 383]such as physical illness also would be taken into account. Furthermore, the comprehensive paradigm moves toward recognizing that in many cases the care receiver “gives” or the caregiver “receives” in a family relationship. In some situations such as those of an elderly couple, in which both spouses suffer from chronic illness, it may be misleading to designate only one party as caregiver and the other as care receiver. Research may more profitably focus on reciprocal caregiving transactions.
Consideration of the temporal dimensions of caregiving, and particularly a life-span oriented approach to caregiving, opens up diverse new content areas for research. Thus, for example, a useful new temporal direction for the study of caregiving relates to understanding caregiving careers. Recent efforts have begun to evaluate the cumulative effects of caregiving throughout the lifespan on caregiver career, starting with the “in home care” stage, proceeding to the “institutionalization” stage, and terminating in the “bereaved” stage (Pearlin, Mullen, Semple, & Skaff, 1990).
The impact of time on social role performance has been the subject of growing attention by social scientists concerned with life-course perspectives (Clausen, 1986; Elder, 1985). The life-course trajectory of caregiving responsibilities also differs based on the type of illness considered. On one extreme are parents of children with developmental disabilities such as autism or Down's syndrome. These parents face predictable lifelong caregiving responsibilities. On the other extreme are illnesses such as cancer that may go into remission and from which recovery is possible but where recurrence of the illness looms as a threat to survival of the care receiver. Each trajectory of illness and life-course stage may call for different research strategies in considering processes and outcomes of caregiving. Thus, for example, cross-sectional studies of older adults confronting the care of adult children with Down's syndrome may be useful. In contrast, understanding of caregiving to children with cancer may require longitudinal studies that follow parents from diagnosis to alternative trajectories of recovery, remission, or intensification of illness.
The contributions to this volume move in the direction of recognizing the important practice and policy implications of research in the field of caregiving. Interventions can benefit from expansion of the caregiving paradigm by noting differential objectives of intervention involving different actors in both the family and formal systems and interventions at different points in the illness and life course. For [Page 384]example, the expanded paradigm recognizes needs of both members of the caregiver-care receiver dyad. Integrated models of service delivery call for addressing needs of both caregivers and care receivers and for recognizing that such needs and desires may not always be symmetrical (Gonyea, Seltzer, Gerstein, & Young, 1988). Thus research is needed to test the appropriateness and effectiveness of intervention models for caregiving families that vary systematically with stages of the life cycle.
Directives for policy also may be enriched by considering contextual influences of culture, ethnicity, and social class. Filial obligations and attitudes toward caregiving are powerfully shaped by culture and ethnicity (Yu et al., 1993). Thus service options such as respite care in a nursing home may be wholly acceptable to one group whereas they are totally unacceptable to another. Accordingly, policies that foster such services may meet with varying success.
The expanded caregiving paradigm, illustrated in contributions to this volume, also provides some direction for bridging the gap between conceptualization and empirical work in the area of caregiving research. To the extent that we can identify salient processes of caregiving, research can be undertaken to examine the mechanisms by which caregiving demands or behaviors impact on well-being of both caregivers and care receivers. We can then go beyond answering only questions about the impact of caregiving on psychological well-being of those providing care and move toward addressing the questions of how or why favorable outcomes might be generated and adverse outcomes avoided.
The journey toward such progress is likely to benefit from a diversity of methodological approaches. There is need for further work to identify processes or mechanisms involved in caregiving. Qualitative and observational studies that could prove to be particularly useful in identifying such processes can focus on the phenomenology of both caregivers and care receivers along with eliciting biographical narratives that can place caregiving in a temporal and life-span developmental context. Such studies also can shed light on previously unrecognized issues that may shape attitudes, behaviors, and feelings of those giving and receiving care.
Critical dimensions of caregiver-care receiver transactions also may be identified through observational research in naturalistic studies in health-care settings and in private homes. Laboratory studies of social interactions between caregivers and care receivers under controlled conditions also could add to our understanding of processes such as cooperation, compliance, self-disclosure, and other social behaviors. [Page 385]Where predictors of important transactions and outcomes in caregiving have been identified, the field might greatly benefit from prospective studies and macrolevel studies that permit consideration of caregiving systems rather than examinations of just individuals involved in caregiving transactions.
It is our hope that the contributions in this volume pave the way for improved conceptualization and operational approaches achieved through an extended caregiving paradigm, increased diversity in research methods, and enhanced communication among researchers and practitioners from different disciplines. We believe this volume will be useful to students, researchers, practitioners, and policy makers as they direct their imaginations toward moving the fields of practice and scholarship forward in a quest for better understanding of the caregiving paradigm.References[Page 386]1986). The life course. Englewood Cliffs, NJ: Prentice Hall.(1985). Perspectives on the life course. In G. H.Elder, Jr. (Ed.), Life course dynamics, trajectories, and transitions, 1968–1980 (pp. 23–49). Ithaca, NY: Cornell University Press., Jr. (1988). Acceptance of hospital-based respite by families and elders. Health and Social Work, 201–208., , , & (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist. 30, 583–594. http://dx.doi.org/10.1093/geront/30.5.583, , , & (1993). Caregivers of the cognitively impaired and the disabled in Shanghai, China. In S. H.Zarit, L. I.Pearlin, & K. W.Schaie (Eds.), Caregiving systems: Formal and informal helpers (pp. 3–30). Hillsdale, NJ: Lawrence Erlbaum., , , , , , , & (1989). Do we need another “stress and caregiving study?”The Gerontologist, 39, 147–148. http://dx.doi.org/10.1093/geront/29.2.147(
About the Editors[Page 409]
David E. Biegel, Ph.D., is the Henry L. Zucker Professor of Social Work Practice and Professor of Sociology, Mandel School of Applied Social Sciences, Case Western Reserve University. He currently also serves as Co-Director of the Center for Practice Innovations at the Mandel School. He has been involved in research, scholarship, and practice pertaining to the delivery of services to hard-to-reach population groups and the relationship between informal and formal care for the past 15 years. His recent research activities have focused on natural support systems for persons with chronic mental illness, family caregiving, and mental health and aging. His recent books include: Family Caregiving in Chronic Illness: Alzheimer's Disease, Cancer, Heart Disease, Mental Illness, and Stroke (co-authored with Esther Sales and Richard Schulz, Sage, 1991); Family Preservation Services: Research and Evaluation (co-edited with Kathleen Wells, Sage, 1991); and Aging and Caregiving: Theory, Research, and Policy (co-edited with Arthur Blum, Sage, 1990).
Eva Kahana, Ph.D., is Pierce T. and Elizabeth D. Robson Professor of Humanities, Chair of the Department of Sociology, and Director of the Elderly Care Research Center at Case Western Reserve University. She received her doctorate in human development from the University of Chicago and did a postdoctoral fellowship with the Midwest Council on Social Research in Aging. She has received the Gerontological Society of America Distinguished Mentorship Award. She is currently a Mary E. Switzer Distinguished Fellow of the National Institute of Disability and Rehabilitation. In the past year she has received the Heller Award from Menorah Park Center for the Aged and was named the Distinguished Gerontological Researcher in the State of Ohio. She [Page 410]has published extensively in the areas of stress, coping and health of aged, late-life migration, and environmental influences on older persons.
May L. Wykle, Ph.D., R.N., F.A.A.N., is the Florence Cellar Professor of Gerontological Nursing, the Director of the University Center on Aging and Health, and the Associate Dean for Community Affairs at the Frances Payne Bolton School of Nursing, Case Western Reserve University. She has received a National Institutes of Mental Health Geriatric Mental Health Academic Award and was Director of a five-year Robert Wood Johnson Teaching Nursing Home Project. Her research area is geriatric mental health, self-care, and family caregiving. She is currently the Principal Investigator of a 4-year study, “Black vs. White Caregivers' Formal/Informal Service Use.” She has written many articles, chapters, and books. She received the 1993 Leadership Award for Excellence in Geriatric Care from the Midwest Alliance in Nursing.
About the Contributors[Page 411]
Joan Aldous, Ph.D., is the William R. Kenan, Jr., Professor of Sociology at the University of Notre Dame. She has written a paper commissioned for the United Nations titled “Families in the Development Process” and has received the Ernest W. Burgess Award in recognition of her continuous and meritorious contributions to theory and research in the family field of sociology. Her research has concerned parent-child relations with primary- and middle-school-age children and preretirement couples' interchanges with their adult children. Her articles have been published in numerous journals.
David M. Bass, Ph.D., is Assistant Director of Research at The Margaret Blenkner Research Center of The Benjamin Rose Institute. He has conducted numerous studies and published extensively on issues related to the effects of chronic illness on aged persons and their family members. Special areas of interest include the utilization and impact of formal services, social support, the effect of Alzheimer's disease on family members, bereavement, and the organization of long-term care. He currently is Co-Principal Investigator of a project examining the relationship between formal and informal assistance use by elderly receiving case-management services.
Patricia Flatley Brennan, Ph.D., R.N., is Associate Professor of Nursing and Systems Engineering at Case Western Reserve University. She received her master's degree in nursing from the University of Pennsylvania and her doctorate in industrial engineering at the University of Wisconsin-Madison. Following 7 years of clinical practice in critical care nursing and psychiatric nursing, she has held several academic nursing positions. She developed and directed the Computer Link, an electronic network designed to reduce isolation and improve self-care [Page 412]among home care patients. In 1991 she was elected as a Fellow of the American Academy of Nursing, and in 1992 she became Associate Editor for the Journal of the American Medical Informatics Association.
Venkatesan Chakravarthy is a Ph.D. student in the Mandel School of Applied Social Sciences, Case Western Reserve University. Besides family caregiving with the chronically ill, his research interests include infant mortality and female infanticide in India. He currently is involved in the Healthy Family Healthy Start Project as a Research Assistant. The goal of the project is to reduce infant mortality in the selected areas of the City of Cleveland and Warrensville Heights.
Dimitri A. Christakis, M.D., is a Resident in Pediatrics at the Seattle Children's Hospital and Medical Center and the University of Washington. He graduated from Yale University and the University of Pennsylvania School of Medicine. His current research interests include the impact of medical interventions on child development and the medical ethical development of physicians in training.
Nancy N. Eustis, Ph.D., is Special Assistant in Disability, Aging, and Long-Term Care Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. She is on leave from her position as Professor of Public Affairs and Planning at the Humphrey Institute of Public Affairs, University of Minnesota, where she teaches courses in social policy, aging policy, and evaluation research. She is senior author of Long-Term Care for the Elderly: A Policy Perspective and coeditor of Aging and Disabilities: Seeking Common Ground.
Lucy Rose Fischer, Ph.D., is Research Investigator in Geriatrics at Group Health Foundation in Minnesota. She is the author of three books and has published numerous professional articles and research reports on intergenerational family relationships, informal caregiving, paid home care, health care, volunteering, and qualitative research methods. She has been on the faculties of the University of Minnesota and St. Olaf College and was Senior Research Scientist at the Amherst H. Wilder Foundation. She is a Fellow of the Gerontological Society of America.
Barbara A. Given, Ph.D., R.N., F.A.A.N., is Professor and Director of the Center for Nursing Research in the College of Nursing and Associate [Page 413]Director for the Cancer Center at Michigan State University. She has served on the Institute of Medicine panel to advise the Department of Defense on its Breast Cancer Program. She has been actively involved in research of long-term and home care for more than 9 years. She has been awarded grants from the National Cancer Institute, the National Institute of Nursing Research, the National Institute on Aging, and the American Cancer Society. Recently, she has received a grant to examine the formal and informal costs of cancer care for patients over the age of 65 with either breast, colon, lung, or prostate cancer. She has authored and coauthored numerous articles on supportive and continuing care for families of elderly patients with cancer and other chronic diseases.
Charles W. Given, Ph.D., is Professor in the Department of Family Practice in the College of Human Medicine at Michigan State University. He has been involved in research and scholarship related to home care of the elderly and chronically ill for the past decade. The focus of this work is to understand the family and patient experience and patterns and cost of formal and informal care. He is widely published about caregiving patterns of informal and formal care. Current research activities include serving as Principal Investigator on a 5-year longitudinal intervention study of rural patients with cancer and as Co-Principal Investigator of a 4-year study on patterns and costs of cancer for elderly individuals with cancer.
Ronald J. Hammond, Ph.D., is Assistant Professor of Sociology at Utah Valley State College. He received graduate training in gerontology and sociology of the family from Brigham Young University. He recently completed a postdoctoral fellowship in gerontology with the Department of Sociology, Case Western Reserve University. His current research pertains to family and cross-cultural aspects of aging, especially concerning the divorced and separated. He has worked on the development of various grants, published articles, produced and directed an educational documentary, and is currently developing an undergraduate gerontology program at Utah Valley State College.
Dorothy Jones Jessop, Ph.D., is Director of Research and Evaluation at the Medical and Health Research Association of New York, Inc., a self-sustaining not-for-profit organization that seeks to secure funds for health services and health-services research for underserved populations in New York City. She has part-time academic appointments as an [Page 414]Associate Professor in the Department of Pediatrics at Albert Einstein College of Medicine and an Associate Research Scientist in the Division of Sociomedical Sciences at Columbia University School of Public Health. She received her doctorate in sociology from New York University. She has spent more than 20 years working on applied social research projects and evaluations. Her major research interests are in the area of chronic physical illness and in disabilities, especially mental retardation, and she publishes primarily in these areas.
J. Randal Johnson, Ph.D., is Adjunct Assistant Professor of Sociology at Case Western Reserve University. He also is a Research Associate at the Geriatric Care Center at Fairhill Institute, where he acts as Research and Methodological Consultant to the Geriatric Fellows Program. His research is focused primarily on the positive and negative effects of social support networks on the mental and physical well-being of frail elderly persons. He currently is involved as Principal Investigator and Co-Principal Investigator, respectively, in two pilot studies: “Factors Associated With Negative Interactions Between Caregivers and Care-Receivers” and “A Family Intervention With Elderly Female Alcoholics” (with Dr. James Campbell). He also is Co-Investigator on the second phase of the “Adaptation to Frailty” Merit Award study.
Boaz Kahana, Ph.D., is Professor of Psychology and Director of the Center on Aging at Cleveland State University. He received his doctorate in human development and psychology from the University of Chicago in 1967. He is a Fellow of the Gerontological Society of America, the American Psychological Society, and the American Orthopsychiatric Association, where he served as Chair of the Study Group on Aging. He is a clinical and adult developmental psychologist with special interest in late-life sequelae of extreme trauma. He has been awarded research grants dealing with stress and extreme stress among the elderly in community and institutional settings. He is currently Co-Principal Investigator of a longitudinal Merit Award study of retirees who have relocated to Florida. His funded research and publications also have focused on the sequelae of external trauma among elderly survivors of the Holocaust and Pearl Harbor. He is author of numerous articles and chapters dealing with stress, coping, and adaptation among the elderly.
Catherine F. Kane, Ph.D., R.N., is Associate Professor of Nursing and Psychiatric Medicine, University of Virginia; Director of Education and [Page 415]Evaluation, Western State Hospital; and Faculty Associate of the University of Virginia's Southeastern Rural Mental Health Research Center. Her career has focused on nursing care of the seriously mentally ill and their families. She has conducted research and published on issues regarding long-term care of the seriously mentally ill and programs to support families caring for this population. Her current research focuses on predicting long-term care needs of the seriously mentally ill and models of community care.
Anne E. Kazak, Ph.D., is Associate Professor of Psychology in the Departments of Pediatrics and Psychiatry at the University of Pennsylvania; Director of Psychosocial Services in the Division of Oncology at The Children's Hospital of Philadelphia; and a licensed clinical psychologist. Her research interests focus on child and family adaptation to pediatric medical conditions. She is the author of more than 45 papers in the area. She is currently the Principal Investigator on three research and service provision grants.
Kyle Kercher, Ph.D., is Associate Professor in the Department of Sociology at Case Western Reserve University. He currently also serves as Director of the Education, Epidemiology, and Health Services Research Administration of the Northeast Ohio Multipurpose Arthritis Center. He received his doctorate from the University of Washington, where he also did a postdoctoral fellowship in gerontology. He is involved in a number of longitudinal studies of the elderly and is Principal Investigator of a 5-year project analyzing buffers of the arthritis-disability cascade among old-old persons. His current research interests and publications concern adaptation to frailty among the aged, and structural equation models of physical health and psychological well-being.
Barbara J. Leonard, Ph.D., is Associate Professor of Nursing in the School of [Page 416]Nursing at the University of Minnesota. Her research focuses on the care of children with special health-care needs and their families. She is currently the Director of two federally funded training grants on the care of children with special health-care needs. In addition, she heads the Pediatric Nurse Practitioner area of study within the School of Nursing.
Eugene Litwak, Ph.D., is a Professor in the Department of Sociology and Head of the Division of Sociomedical Sciences at the School of Public Health, Columbia University. His research has been on the roles of formal organizations and informal groups (such as family, friends, and neighbors) in modern industrial societies. His current research is in three fields: (a) caregiving needs and optimal forms of support for minority women who are HIV seropositive, (b) the coordination between agencies delivering mental health services to adolescents, and (c) the interaction between stages of health of older people and types of retirement communities.
Jack H. Medalie, M.D., M.P.H., F.A.A.F.P., is the Dorothy Jones Weatherhead Professor Emeritus, of Family Medicine at Case Western Reserve University. He has practiced medicine in various countries, including Africa, Israel, and the United States. He also directed a Family and Community Health Center in a low socioeconomic area of Jerusalem for 10 years and developed and chaired three new departments of family medicine in Israel and in Cleveland, Ohio. His major research interests have revolved around epidemiological investigations of chronic diseases—coronary heart disease, angina pectoris, diabetes, duodenal ulcer, and hypertension—in large population groups. A feature of this research was the interaction of psychosocial factors with biological ones in the search for risk factors relating to the development of these diseases. He has published a number of books and more than 100 articles in various medical journals. He was elected to the Institute of Medicine of the National Academy of Sciences in 1978 and is currently finalizing research projects related to physical activity and heart disease, intermittent claudication, and various new medical educational ideas.
Elizabeth Midlarsky, Ph.D., is Professor in the Department of Clinical Psychology and Director of the Center for Lifespan and Aging Studies at Teachers College, Columbia University. She is former editor of the Academic Psychology Bulletin. Her ongoing research interests include predictors and consequences of altruism and helping from early childhood through late life, in siblings of people with disabilities, and among non-Jewish rescuers of Jews during the Holocaust, as well as psychotherapy with diverse populations. She is coauthor of the volume For the Sake of Others: Altruism and Helping by Older Adults, and is currently Principal Investigator of a study on predictors and barriers to mental-health-care utilization and help seeking by older adults.
[Page 417]Shirley M. Moore, Ph.D., R.N., is Assistant Professor of Nursing, Case Western Reserve University. Her research has focused on interventions to support families coping with acute and chronic illness. She most recently has been a member of research projects designed to determine the effect of a computer network intervention to support home care with two groups: persons living with AIDS and caregivers of persons with Alzheimer's disease.
Heather J. Moulton, M.P.H., is the Project Coordinator for Research and Technology at Aging in America, Bronx, New York. She received her M.P.H. and M.S. degrees from Columbia University. She has had extensive long-term care experience as an occupational therapist. Her research interests focus on caregiving linkages between formal organizations and informal social support.
Linda S. Noelker, Ph.D., is Associate Director for Research at The Benjamin Rose Institute and Director of the Institute's Margaret Blenkner Research Center. For the past 20 years she has conducted applied aging research on the nature and effects of family care for frail aged and the elderly's patterns of service use. She has published widely on the aged's support networks, the well-being of family caregivers, predictors of service use, and the nature of social relationships in nursing homes. Her current research activities include serving as Principal Investigator of a project on informal and formal assistance use by elderly receiving case-management services. She is also the Principal Investigator of two studies on the quality and effects of relationships between nursing home residents and nurse assistants.
Joan M. Patterson, Ph.D., is Associate Professor of Maternal and Child Health in the School of Public Health and the Director of Research for the Center for Children With Chronic Illness and Disability, both at the University of Minnesota. Using a biopsychosocial paradigm, her research is focused on examining the reciprocal impacts of chronic illness in child and family functioning. Of particular interest is the development and evaluation of interventions for preventing psychopathology in individuals and families coping with chronic physical illness. Her current research activities include serving as Co-Principal Investigator of a longitudinal study of children with a variety of chronic illness conditions to determine the child, family, and community factors associated with [Page 418]psychological and social competence in the child and family. She has served as an International Rehabilitation Consultant to the government of India and has published extensively about families and stress, particularly the stress of chronic illness.
Li-yu Song, Ph.D., is Research Program Manager of the Center for Social Work Practice Innovations at Case Western Reserve University. She has extensive research experience in the mental health problems of adolescents and elderly, including working as the Research Coordinator of the Three-Year Adolescent Follow-up Study from 1988 to 1991. Her recent work has focused on factors associated with caregiver burden of persons with chronic mental illness and the relationship between violence exposure and mental health sequelae among adolescents. She has published articles in various journals.
Rosalie F. Young, Ph.D., is Associate Professor and Graduate Director of Community Medicine, Wayne State University School of Medicine. She has conducted research on health of the aged and has been Principal Investigator and Co-Principal Investigator on several studies. Her current focus is on cultural aspects of family management of Alzheimer's disease. She is the author of a book on health and aging and has published numerous articles and abstracts.