Family Support and Family Caregiving across Disabilities

George Singer, David Biegel, Patricia Conway

• Publisher: Routledge
• Year: 2014
• Print ISBN: 9780415682688
• eBook ISBN: 9781317979128
• Topic: Medicine
• Subtopic: Health Care Delivery

Family members provide the majority of care for individuals with disabilities in the United States. Recognition is growing that family caregiving deserves and may require societal support, and evidence-based practices have been established for reducing stress associated with caregiving. Despite the substantial research literature on family support that has developed, researchers, advocates and professionals have often worked in separate categorical domains such as family support for caregiving for the frail elderly, for individuals with mental illness, or for people with development disabilities.

Family Support and Family Caregiving across Disabilities addresses this significant limitation through cross-categorical and lifespan analyses of family support and family caregiving from the perspectives of theory and conceptual frameworks, empirical research, and frameworks and recommendations for improvements in public policy. The book also examines children with disabilities, children with autism, adults with schizophrenia, and individuals with cancer across the life cycle.

This book was published as a two-part special issue in the Journal of Family Social Work.

Introduction: An Overview of Family Support and Family Caregiving across Disabilities

David E. Biegel

Mandel School of Applied Social Sciences, Case Western University, Cleveland, Ohio

George H. S. Singer

Gevirtz Graduate School of Education, University of California, Santa Barbara, California

Patricia Conway

Essentia Institute of Rural Health, Duluth, MN

Over the past two decades, attention has increased regarding the role that families play in providing support to their family members with physical, cognitive, or psychiatric impairments and disabilities. This attention has resulted in a rich and growing literature on family caregiving and family support as reflected by the chapters in this book. The book’s nine chapters are organized into three sections—Conceptual Frameworks, Empirical Research, and Public Policy. In this overview, we present major themes and issues in each of these three areas and brief summaries of the content of the book’s chapters.

Part I: Conceptual Frameworks

The first section of this book focuses on major premises in research on family caregiving and family support. A re-evaluation of theories of family caregiving is timely for several reasons. Major societal changes in the past half century raise the question of whether or not research paradigms launched in the 1970’s need to be reviewed to determine if they are malleable and durable in a changed environment. Early theories and studies appeared in number initially in the mid 1970’s. During this era a dominant paradigm was established, the stress and coping perspective. It defined having family members with disabilities as stressors and caregiving as burdensome, resulting in physical and psychological distress. The stress, coping, and crisis framework has guided hundreds of caregiving studies and generated a considerable knowledge base. However, the past four decades have been marked by transformation in the make-up of families, societal assumptions about who should provide care, views of help giving, and the aims of family support.

Feminism, multiculturalism, and the positive psychology movement have altered the intellectual context. As a result, ideas that have previously been taken for granted have been challenged, including the assumption that mothers and daughters should perform almost all of the unpaid caregiving for their relatives. Many women no longer accept that caregiving is an inevitable part of their gender role. Men are increasingly active as caregivers but they are far from providing an equal share of caregiving. Another important shift has been the undermining of the once pervasive belief that caregiving has only negative impacts on family care providers. A more contemporary view is that there is a wide range in variability in the ways caregiving for a relative with a disability impacts caregivers. This expanded range includes positive views of the caregiving experience. The general emphasis on pathology in the social sciences has been eroded by the positive psychology movement. Researchers have begun studying successful families and trying to account for the conditions which promote resilience, well-being and perceptions of benefit for both caregivers and care recipients. This change suggests that the rationale for providing community assistance to caregiving families might go beyond mere rescue from dire straits to include prevention of distress and promotion of well-being in family caregivers and care-recipients.

The political context in which families care for family members with disabilities has also changed since the dominant paradigm in the study of family care was established. Family caregiving has emerged on the national agenda partly through the formation of national organizations advocating for federal and state legislation aimed at channeling resources to bolster the capacity of families to assist relatives with disabilities. The aging U.S. population has placed an increasing load on the long-term care system, prompting increased attention to the role families can play in efforts to reduce secondary negative effects of disabilities and prevent placements in nursing home and other residential institutions.

As emphasized in this volume, maintaining the current disciplinary “silos” in family research results in lost opportunities. Presently, journals, professional associations, and research communities are separate, determined largely by the disability category or age of the care receivers. People who are elderly are studied by gerontologists who publish in journals devoted exclusively to studies of this group. Similarly, there is a distinctive set of journals and professional associations concerned about individuals with intellectual disabilities. We argue in this volume that much can be gained by making the walls between disciplines more permeable. Theories which can transcend specific disability groups foster such cross fertilization.

In a similar vein, growing cultural diversity in the U.S. poses challenges to the dominant stress and coping paradigm. Some families emigrating from Asia, Africa, and Latin America hold concepts of family, disability, and help giving that differ substantially from those of the Euro-American majority. Thus theories that can provide useful ways of thinking about caregiving in widely diverse cultural contexts across diverse family structures are also needed.

Models of professional-client relationships have also called into question previous beliefs about professional dominance in helping relationships and about the role of bureaucracy in help-giving organizations. For example, the way power and control of resources for caregiving families has been held by bureaucratic systems of care have been questioned. As an alternative to top down control, there has been a movement to establish ways for families to be responsible for determining how to best use public funds for supporting their capacity to help family members with disabilities. Several authors have suggested that transferring control and resources directly to consumers of services will require a new understanding of how professionals provide help. There is also a need to establish what kinds of help should be made available and at what point in time. Early forms of family assistance for family caregiving were primarily concerned with a residual group of families receiving assistance only after their capacity to provide care has broken down. More recent public policy and advocacy efforts have begun to have a preventative focus aimed at providing supports to prevent failure of family care.

Each of the four chapters in the first section of this volume makes contributions toward relevant and widely applicable approaches to family caregiving in our changing society. Brief summaries of the major themes of these chapters follow.

Singer, Biegel, and Ethridge - Toward A Cross Disability View of Family Support for Caregiving Families

Family members provide the majority of care for individuals with disabilities in the U.S. A variety of informal and formal support services have been developed to help reduce the emotional, financial and physical costs of caregiving by these caregivers. These supports, however, are minimal compared to the extent of the need for community resources to bolster the family caregiving role. As Singer, Biegel, and Ethridge discuss in this chapter, much of caregiving research, practice and policy is disease or disability specific. The authors discuss the limitations of this approach, which often amounts to “re-inventing the wheel.” Thus, conceptual frameworks, programs and policies often fail to build on knowledge learned about caregiving with one chronic illness, such as Alzheimer’s disease, that might be applied to another, such as Schizophrenia.

Singer, Biegel, and Ethridge argue that a cross-categorical framework is needed to enhance caregiving research, practice, and policy. Such an approach would be based on a functional analysis of disability, family caregiving, and the kinds of supports that caregivers require. Across chronic conditions, caregivers who provide the highest levels of care experience similar problems. In addition, a review of the research on caregiver burden in categorical research suggests that many functions that caregivers perform are likely to be more similar across conditions than different. Thus, the authors believe that, given the commonalities inherent in family caregiving regardless of why a care recipient needs assistance, ideas developed in one categorical area are likely to be equally helpful in others. Further, recent research suggests that family caregiving can be associated with positive impacts on the family under the right conditions. The authors provide examples from theory (contribution of feminist perspectives), program design (consumer-directed care) and research (effectiveness of caregiver support programs) that demonstrate the value and usefulness of their cross-categorical framework.

Dunst and Trivette - Capacity-Building Family-Systems Intervention Practices

As Dunst and Trivette indicate, most early childhood initiatives during the 1960’s to the 1980’s were based on the perceived deficits of children, their parents, or their environment. Over a quarter of a century ago, Dunst and Trivette were instrumental in the transformation of deficit-based, child-focused, early intervention programs into strength-based, family-focused, early childhood intervention and family support programs. This chapter describes a revised and updated approach to early intervention and family support originally presented in their 1988 book Enabling and Empowering Families.

In assessing their early intervention and family support model twenty years after its original publication, the authors stated that most surprising was the fact that “nearly all the principles and practices have stood the test of time and still have value for guiding early childhood intervention and family support.” The updated version of their model’s four operational components of family-systems assessment and intervention has been refined based on research and practice. As the authors indicate, the model is implemented by using capacity-building, help-giving practices to identify family concerns and priorities, the supports and resources that can be used to address concerns and priorities, and the use of family member abilities and interests as the skills to obtain supports and resources. The chapter summarizes findings from research syntheses showing the relationship between different components of the family-systems model and parent, family, and child behavior and functioning; future directions for this field are delineated. Although it has been developed and implemented in the field of early intervention for young children, this model is appealing as a possible cross-disability family support framework. The capacity building and strength based approaches, as well as help-giving which empowers caregivers, are all directly applicable to other populations at other life stages.

Kahana, Kahana, Wykle, and Kulle - Marshalling Social Support: A Care-Getting Model for Persons Living With Cancer

In their chapter on care-getting, Kahana, Kahana, Wykle, and Kulle remind us that caregiving is a two way process that involves both the care-recipient’s needs and desires as well as those of the caregiver. While the literature has focused primarily on chronic illnesses with the needs and desire of the caregiver, attention also needs to be paid to the care-recipient’s needs and desires. In fact, perhaps the term care-recipient is not an appropriate one, as it implies that the role of persons with a chronic illness is just to passively “receive” care, rather than to proactively “get” care. In this chapter, the authors propose a stress-process theory based conceptual framework for understanding how patients living with cancer can be proactive in care-getting.

The authors’ model is an extension of their previously articulated proactivity-based model of successful aging. It is designed to demonstrate how patients can play an active role in obtaining and nurturing care in dealing with life-threatening illness in order to maintain a good quality of life while managing a chronic illness. Although the chapter focuses discussion of the model on patients living with cancer, it is also relevant to patients living with other chronic or life-threatening illnesses. For example, in the past few decades in the literature on developmental disabilities, considerable attention has been focused on empowering consumers to direct their own care and on educating children so that they can take charge as adults.

The care-getting model postulates that, in order for individuals to maintain a good quality of life while dealing with physical or emotional impairments of chronic illnesses or while they encounter acute health events, they must adapt proactively by marshaling informal and formal support resources. In this model, stressors impact quality of life outcomes, which are moderated by care-getting adaptations and resources and the receipt of patient responsive informal and formal care. Examples of the moderator variables in the model include dispositions and attitudes (optimism, resourcefulness, religiosity, and spirituality); proactive adaptations (marshaling support, health care advocacy, planning, and use of technology); informal support resources; and formal support resources. In the developmental disabilities arena, researchers have experimentally demonstrated that adolescents with a variety of disabilities can be taught the skills needed to seek social support for attaining self-determined goals and to negotiate assistance.

Epley, Summers, and Turnbull - Characteristics and Trends in Family-Centered Conceptualizations

Family-centered practice has been an important concept of early intervention and early childhood special education for the past thirty years. As Epley, Summers and Turnbull discuss in their chapter, it has in fact become an integral principle that guides the design and delivery of service delivery models. Its principles have now become embedded in public policy, such as the Individuals with Disabilities Education Act.

Epley and colleagues point out that, despite the importance and centrality of family-centered care, there is a lack of consensus in defining family-centered care. Thus, the focus of this conceptual chapter is to examine current definitions of family-centered care in order to determine if a common definition exists and, if so, whether that definition has changed significantly over the past decade. The authors approach this task by conducting a comprehensive review of 63 peer-reviewed journal articles on family-centered practices published between 1996 and 2007 across disciplines (education, social work, and health). In reviewing these articles, the authors’ framework focuses on five key elements: family as the unit of attention, family choice, family strengths, family-professional relationship, and individualized family services. The authors found that, though the key elements of family centeredness (i.e., family choice, family strengths, family-professional relationship, and individualized family services) have remained constant, over time, the emphasis has shifted from the family as the unit of attention to family-professional relationship and family choice. The authors recommend that national family organizations and professional organizations across disciplines involved in early intervention/early childhood services should work together to explicate essential elements of family centeredness. This should then be followed by research investigations on how best to prepare early childhood professionals to implement family-centered practice.

Part II: Empirical Research

The social sciences have developed powerful intellectual tools for description, analysis, and evaluation of important social problems and interventions to address them. An ideal motivating much of this social scientific work is the hope that public policy will be shaped not only by the give and take of political action but also by trustworthy knowledge about the nature of problems and the efficacy of tested approaches toward addressing them. One well established finding across the different disciplines and disability foci is that caregiving changes over the life cycle so that it is not only helpful to compare research across disabilities but also across different stages of the lifecycle. The studies in this section ask questions which cut across different disability groups and different stages in the family lifecycle.

The design of services is likely to influence family adaptation over the lifecycle. Over the past decade there has been considerable interest in empowering people with disabilities to direct their support from social agencies. The first chapter in this section illustrates this important trend in an evaluation of a consumer directed care program.

An important determinant of family life, in addition to the stage of the family life-cycle and the nature of a family member’s disability, is the make-up of the family. The impacts of caregiving on marriage, divorce, and remarriage have been assumed to be predominantly negative until recently. The second chapter in this section examines the impact of childhood chronic illness on couples and couple relationships. It exemplifies the growing challenge to the stress, burden, and distress model which has predominated.

Finally, regardless of the cause of the care recipient’s disability, the life stage and make-up of the family, in our increasingly multi-cultural society understanding caregiving families in light of their cultures is critical. The third chapter in this section illustrates work in this domain, a study of Latino caregivers. Together these studies point to areas of inquiry important for understanding and serving the rapidly growing number of caregiving families in a changing social and intellectual context. Brief summaries of the major themes of each of the three chapters in this section of our book are presented below.

Vinton - Caregivers’ Perceptions of a Consumer-Directed Care Program for Adults With Developmental Disabilities

Consumer choice, autonomy, and self-determination are important themes under-girding programs and policies for both persons with disabilities and family members providing care. As Vinton notes in this chapter, consumer-directed support programs’ major goal is shifting more authority and responsibility from service providers to consumers and/or their family members. These programs are both national, such as the Cash and Counseling Demonstration and Evaluation Program, as well as State level, such as California’s In-Home Support Services or Illinois’ Home Based Support Services Program.

Previous research studies focused primarily on program costs and rates of institutionalization. More recently, however, studies have also examined the perceptions of both consumers and family caregivers about these programs. This chapter, using both quantitative and qualitative methods, examines results from a 12 month consumer and care-giver directed pilot program for families with adults with developmental disabilities, implemented in three sites in one southeastern US state. Pre and post surveys of 50 caregivers examined perceptions of choice, goodness of fit of services to consumer’s needs, and satisfaction with services and the p...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• 1. Introduction: An Overview of Family Support and Family Caregiving across Disabilities
• Part I: Conceptual Frameworks
• Part II: Empirical Research
• Part III: Public Policy
• Index