Social Work Family Caregiving
by
Bradley D. Zodikoff
  • LAST REVIEWED: 06 May 2015
  • LAST MODIFIED: 30 September 2013
  • DOI: 10.1093/obo/9780195389678-0206

Introduction

In the United States, an estimated forty-two million family caregivers provide some form of care to adults needing assistance. A family caregiver includes “any relative, partner, friend or neighbor who has a significant relationship with, and who provides a broad range of assistance for, an older adult or an adult with chronic or disabling conditions” (Feinberg, et al. 2011. Valuing the Invaluable: 2011 Update. The Growing Contributions and Costs of Family Caregiving. AARP Public Policy Institute, p. 17, cited under Policy). Family caregiving is a widely experienced phenomenon encompassing rewards, strains, and risks for negative health, mental health, and economic outcomes. To approach caregiving as a topic of study requires attention to complex familial, cultural, social, psychological, health, and policy contexts. The caregiving literature is broadly interdisciplinary in scope, engaging such fields as gerontology, end-of-life and palliative care, disability studies, applied family studies, and policy analysis (see General Overviews and Reference Works). Scientific literature on caregiving largely follows a medical model, as researchers often study the needs of caregiver groups in relation to the trajectory of specific diagnoses, such as Alzheimer’s disease, cancer, advanced heart disease, neurological disorders, AIDS/HIV, and mental illnesses (see Selected Categories of Caregiver Populations). Because family caregivers vary widely vis-à-vis salient demographic characteristics, this literature explores important contextual dimensions of gender, relationship type (e.g., spouses, adult children, grandparents), race, ethnicity, culture, and sexual minority status, to name a few key variables. Caregiving literature also focuses on the milieu of specific care delivery settings (e.g., home health care, institutional-based long-term care; see Selected Demographic Variables Addressed in Caregiving Research). Caregiver assessment research has contributed to the development of standardized measurement tools for use in research and clinical settings (see Assessment). Intervention research has led to an increasing number of evidence-based protocols evaluating clinical outcomes such as caregiver burden, depression, stress appraisal, social support, and delayed time to nursing home placement. The need for evidence-based interventions for caregivers remains acute, given documented risk for negative outcomes with respect to caregiver health, mental health, and well-being. Support services developed specifically for family caregivers comprise a major component of the intervention literature (see Intervention). On a policy level, caregiver advocacy movements in the United States have made progress in advancing key legislation in support and recognition of family caregivers. However, as the US population ages and as caregivers’ needs in society remain greatly unmet, family caregivers as a constituency continue to advocate for creating more responsive care delivery systems, supportive workplace environments, and effective government policies (see Specialized Resources and Organizations and Policy).

General Overviews

The sources in this section provide well-conceptualized and highly useful overviews of the family caregiving literature. Greenberg, et al. 2006 summarizes a vast quantity of research on caregiving to older adults. The authors’ book chapter’s reference list is notably comprehensive and well worth perusing as a starting point. The authors further organize the literature through the lens of the stress process model, and introduce findings with respect to special caregiver populations. Montgomery, et al. 2007 offers another worthwhile book chapter, synthesizing findings from caregiving literature on older adults. The authors introduce a framework for caregiver identity theory and summarize positive and negative caregiver outcomes distilled from the empirical literature. Levine 2004 is a remarkable book on caregiving that serves as a welcome orientation to the topic. This book does not offer a scientific literature review per se but rather presents an illuminating constellation of essays and perspectives that serve to sensitize the scholarly reader to critical themes regarding the experiences of family caregivers in interaction with individual health care professionals and with health care as a delivery system. Finally, Singer, et al. 2012 is a recently published important volume examining family support and family caregiving across distinct categories of caregiver research.

  • Greenberg, Jan, Marsha Seltzer, and Eva Brewer. 2006. Caregivers to older adults. In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 339–354. New York: Oxford Univ. Press.

    DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

    A critical overview summarizing a wide scope of research on family caregiving to older adults. Draws upon the stress process model as an organizing framework. Orients the beginning researcher to this vast literature. Covers special populations, including male caregivers, end-of-life care, and aging-parent caregivers to adults with disabilities.

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    • Levine, Carol, ed. 2004. Always on call: When illness turns families into caregivers. 2d ed. Nashville: Vanderbilt Univ. Press.

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      This gem of a volume brings together narratives and unique perspectives of family caregivers, clinicians, policy experts, and advocates to present an integrated, multidimensional view of the phenomenon of family caregiving. Required reading. Chapters written by family caregivers and leading professionals.

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      • Montgomery, Rhonda J. V., Jeannine M. Rowe, and Karl Kosloski. 2007. Family caregiving. In Handbook of gerontology: Evidence-based approaches to theory, practice, and policy. Edited by James A. Blackburn and Catherine N. Dulmus, 426–454. Hoboken, NJ: Wiley.

        DOI: 10.1002/9781118269640Save Citation »Export Citation »E-mail Citation »

        A critical summary of recent family caregiving literature, this chapter addresses positive outcomes and negative consequences of caregiving, and the role of formal support services to meet caregivers’ needs. Presents a description of caregiver identity theory supported by the notion of caregiving as a career and as a dynamic change process.

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        • Singer, George H. S., David E. Biegel, and Patricia Conway, eds. 2012. Family support and family caregiving across disabilities. London and New York: Routledge.

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          A recently published volume that advances conceptual, theoretical, and empirical connections across the traditional research domains of caregiving for the elderly, caregiving for persons with mental illness, and caregiving for individuals with developmental disabilities.

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          Reference Works

          The reference works in this section offer outstanding resources on family caregiving research and evidence-based practice. Altilio and Otis-Green 2011, a textbook on palliative social work, is notable for its breadth and depth and contains a host of essential chapter contributions on research and practice with family caregivers in the field of end-of-life care. Notable book chapters from Altilio and Otis-Green 2011 include Fineberg and Bauer 2011 and Glajchen 2011 (both cited under Selected Categories of Caregiver Populations: End-of-Life Care). Berkman and D’Ambruoso 2006 contributes an indispensable reference volume on social work in health and aging, replete with chapters on intergenerational family practice in addition to family caregiving research. For selected book chapters from Berkman and D’Ambruoso 2006 cited throughout this bibliography, see Carlton-Laney 2006, Magaña 2006 (both cited under Selected Demographic Variables Addressed in Caregiving Research: Race, Ethnicity, and Culture), Kropf and Yoon 2006 (cited under Selected Demographic Variables Addressed in Caregiving Research: Gender and Relationship), Greenberg, et al. 2006 (cited under General Overviews), and McCallion 2006 (cited under Selected Categories of Caregiver Populations: Developmental Disabilities). For a synthesis of research with respect to caregiving to older adults in a social context and in terms of the gendered nature of family care, Hooyman and Kiyak 2011 provides an essential introduction in the authors’ highly accessible social gerontology textbook. Talley 2011– is a series of notable reference books on family caregiving on such critical topics as education and support programs, rural caregiving, cancer caregiving, and caregiving and disability. Caregiver series texts by the authors of Talley, et al. 2012 (cited under Selected Categories of Caregiver Populations: Other Chronic and Life-Threatening Illnesses) and Toseland, et al. 2011 (cited under Intervention) appear throughout this bibliography. Future titles from the same series are forthcoming.

          Journals

          The high-quality peer-reviewed journals selected for this section have contributed innumerable articles to the scientific literature on family caregiving. Among the most widely cited interdisciplinary gerontology journals recognized for their contributions to the caregiving literature are the Gerontologist, the Journals of Gerontology Series B: Psychological Sciences and Social Sciences, Research on Aging, Aging and Mental Health and Journal of Applied Gerontology. Within the field of social work, Journal of Gerontological Social Work has contributed a wide scope of articles on family caregiving to inform social work practice, research, and policy. Beyond the field of aging specifically, Social Work, a broadly focused journal of the social work profession, has also published articles on family caregiving. Family Relations within the field of applied family studies also contributes articles on the subject. Because of the vastness of the multidisciplinary literature and in light of space limitations, this list is a useful starting point yet far from exhaustive. Therefore, the reader is encouraged to cross discipline-specific lines whenever possible to search for family caregiving articles of interest in other leading journals in the fields of medicine, psychiatry, nursing, public health, and public policy.

          Specialized Resources and Organizations

          This selective list of professional, policy, educational, and advocacy organizations provides beginning entry points into the impressive domain of family caregiving online resources. The Eldercare Locator, under the auspices of the US Administration on Aging, is an efficient starting tool to help the user locate caregiver services in any locality in the United States. Area Agencies on Aging (AAAs) provide information and referral services for caregivers under state and local auspices; the Eldercare Locator website helps to identify these and other local resources. Disease-specific organizations, of which the Alzheimer’s Association is a prime example, offer caregiver information and referral services as well as direct service provision such as counseling and support groups (Alzheimer’s Association Caregiver Center). Other disease-specific organizations are not listed here due to space limitations; however, the reader is encouraged to search for diagnosis-specific organization resources for caregivers when feasible. National education and advocacy organizations such as Family Caregiver Alliance and National Family Caregiver Association maintain extensive web-based portals on a range of essential topics, including useful tools to enhance culturally sensitive practice, and a link to the National Center on Caregiving, a major web-based clearinghouse of essential information and research. Additionally, the AARP Public Policy Institute, which has taken a leadership role in helping to formulate national policy and advocacy strategy on family caregiving issues, offers a gateway to many useful white papers, surveys, and reports that influence the national conversation on family caregiving policy. The American Society on Aging, a multidisciplinary professional organization that bridges the sectors of clinical practice, research, policy, and education, has long focused on family caregiving as a national priority and offers a range of web-based resources to members and nonmembers. The United Hospital Fund (UHF) of New York, through its Next Step in Care Initiative, sustains its critical efforts to change practice with respect to how the health care system works with families; the UHF’s website (United Hospital Fund Families and Health Care Project) offers resources toward this important effort. This list provides an introductory search for high-quality web-based resources on family caregiving.

          Policy

          Family caregivers have emerged as an increasingly visible political constituency, though one with many unmet needs at the macro policy level. Feinberg, et al. 2011 is an essential white paper summarizing current macro issues, legislative initiatives, and policy recommendations in support of family caregivers. Arno, et al. 1999 and LaPlante, et al. 2002 quantify the economic value of the labor contributed by family caregivers to the US economy and discuss implications from a policy perspective. Widely cited national surveys like National Alliance for Caregiving 2009b, MetLife Mature Market Institute 2010, and National Alliance for Caregiving 2009a contribute to understanding the prevalence of caregiving in the United States, as well as the financial and work-life consequences experienced by individuals in the caregiving role. The Administration on Aging offers a website with a detailed description of the National Family Caregiver Support Program. Finally, National Alliance for Caregiving 2012 describes model eldercare programs in the corporate and nonprofit sectors.

          • Arno, Peter S., Carol Levine, and M. M. Memmott. 1999. The economic value of informal caregiving. Health Affairs 18.2: 182–188.

            DOI: 10.1377/hlthaff.18.2.182Save Citation »Export Citation »E-mail Citation »

            Although the figures are now out of date, this article is imperative reading in that this was a landmark study to estimate the economic value of informal caregiving in the United States. Cited in the policy literature, this article uses large data sets to show that the economic value associated with informal caregiving dwarfs national spending on home health care and nursing home care.

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            • Feinberg, Lynn, Susan C. Reinhard, Ari Houser, and Rita Choula. 2011. Valuing the invaluable: 2011 Update—The growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute.

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              This well-executed policy brief provides up-to-date estimates regarding the economic impact of family caregiving vis-à-vis work, lost wages, and retirement. Details key federal and state policy initiatives aimed at addressing family caregiving. Identifies best practices and makes relevant policy recommendations.

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              • LaPlante, Mitchell P., Charlene Harrington, and Taewoon Kang. 2002. Estimating paid and unpaid hours of personal assistance services in activities of daily living provided to adults at home. Health Services Research 37:397–413.

                DOI: 10.1111/1475-6773.029Save Citation »Export Citation »E-mail Citation »

                Using more current national data bases compared to Arno, et al. 1999, also cited in the bibliography, this study estimates both paid and unpaid hours contributed to assisting older adults with disabilities of working age and older age, in addition to estimating the national economic cost of this care. Available online for purchase or by subscription.

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                • MetLife Mature Market Institute. 2010. The MetLife study of working caregivers and employer health care costs: New insights and innovations for reducing health care costs for employers. New York: MetLife Mature Market Institute.

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                  This report analyzes data from the 2008 panel of the National Health and Retirement Study to examine older adult children who provide care to aging parents. Gender differences in lost wages as a result of economic impact of caregiving are identified among the findings. Useful source of information on issues concerning working caregivers, including implications for employers and policymakers.

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                  • National Alliance for Caregiving. 2009a. Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving.

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                    Prepared in collaboration with AARP, this widely cited national survey builds upon prior NAC/AARP surveys conducted in 1997 and 2004 to present an updated picture of the prevalence of caregiving in the United States. Notably, this national telephone survey used oversampling to include African Americans, Hispanics, and Asian Americans in the analysis.

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                    • National Alliance for Caregiving. 2009b. The Evercare survey of the economic downturn and its impact on family caregiving: Report of findings. Bethesda, MD: National Alliance for Caregiving.

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                      Prepared in collaboration with Evercare by United Health Care, a national telephone survey that reports notable findings regarding specific issues associated with the difficulties of providing family care in the context of the current economic downturn in the United States. Identifies issues in the domains of work, savings and debt, living arrangements and impact on caregiver health.

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                      • National Alliance for Caregiving. 2012. Best practices in workplace eldercare: March 2012. Bethesda, MD: National Alliance for Caregiving.

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                        This report showcases model eldercare programs across a diverse range of employers and type of industries.

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                        • National Family Caregiver Support Program.

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                          This link connects to the federal government’s description of the National Family Caregiver Support Program (OAA Title IIIE) administered by the Department of Health and Human Services Administration on Aging.

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                          Selected Categories of Caregiver Populations

                          This section contains bibliographic references within selected population categories of the caregiver literature, organized into specific domains situated at the intersection of diagnosis, illness trajectory, and care setting. Conceptual overlap exists across these broad categories. However, each of these domains represents a distinct, recognized, and mature focal area of family caregiver literature to serve as an entry point into this vast body of knowledge.

                          Alzheimer’s Disease and Dementia

                          Research on family caregivers to persons with Alzheimer’s disease comprises perhaps the most dominant focal area of the caregiver literature. Most of the dementia-related research on family caregiving draws upon the stress process model described in Pearlin, et al. 1990 in a seminal and highly cited article. Aneshensel, et al. 1995 elaborates on the stress process model in an important volume that develops the concept of a caregiving career trajectory with respect to the progression of Alzheimer’s disease. Cox 2007 is an essential edited text on social work practice in the dementia field, including Epstein 2007, a useful chapter on clinical interventions with family caregivers. González and Fortinsky 2012, a recent volume on social work practice, focuses on problem-solving approaches to working with Black and Latino family caregivers to persons with dementia. The dementia field is a center of funded activity for the rigorous evaluation of caregiver-related interventions and evidence-based practices. Go to SAMHSA’s National Registry of Evidence-Based Programs and Practices for protocols and study bibliographies on the New York University Caregiver Intervention (NYUCI) and Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II). Mittleman, et al. 2007 reports specific findings from part of the NYUCI. Wisniewski, et al. 2003 describes the original REACH protocol. Whitlatch, et al. 2006 describes the Early Diagnosis Dyadic Intervention program.

                          • Aneshensel, Carol S., Leonard I. Pearlin, Joseph T. Mullan, Steven H. Zarit, and Carol J. Whitlatch. 1995. Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.

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                            The notion of caregiving as a career that evolves dynamically over time is an important one in the literature. Caregivers transition through multiple stages of need and role identity. This book, which elaborates the stress process model in detail, remains an essential contribution on conceptualizing the caregiver career in relation to the trajectory of Alzheimer’s disease.

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                            • Cox, Carole B., ed. 2007. Dementia and social work practice: Research and interventions. New York: Springer.

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                              A critical resource describing practice with the dementia population. Presents chapters by leading contributors on key issues such as clinical interventions with families in early stages of illness, family care and decision making, care management, and respite and family caregiver support groups. Includes cultural and international perspectives on programs for persons with dementia and their families. Also see Epstein 2007.

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                              • Epstein, Cynthia. 2007. Coping with Alzheimer’s disease: Clinical interventions with families. In Dementia and social work practice: Research and interventions. Edited by Carole B. Cox, 149–169. New York: Springer.

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                                A helpful introduction to evidence-based clinical practice for family caregivers to persons with dementia, written by a clinician and research investigator involved in evaluating an intervention associated with the landmark New York University Longitudinal Spouse-Caregiver Study.

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                                • González Sanders, Delia J., and Richard H. Fortinsky. 2012. Dementia care with Black and Latino families: A social work problem-solving approach. New York: Springer.

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                                  A comprehensive resource addressing the topic of working with Black and Latino family caregivers to persons with dementia. Up-to-date review of research on dementia caregiving, overview of concepts and theories relevant to ethnic caregiving, and useful tools for assessment and intervention employing a problem-solving social work approach.

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                                  • Mittleman, Mary S., David L. Roth, Olivio J. Clay, and William E. Haley. 2007. Preserving health of Alzheimer caregivers: Impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry 15:780–789.

                                    DOI: 10.1097/JGP.0b013e31805d858aSave Citation »Export Citation »E-mail Citation »

                                    In a host of prior articles, the New York University Caregiver Intervention has examined spousal caregiver depression, stress appraisals, social support, and delay in nursing home placement as study outcomes. This particular article reported findings on the effect of the counseling intervention on the physical health of spousal caregivers to persons with dementia. Available online for purchase or by subscription.

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                                    • Pearlin, Leonard I., Joseph T. Mullan, Shirley J. Semple, and Marilyn M. Skaff. 1990. Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 30:583–594.

                                      DOI: 10.1093/geront/30.5.583Save Citation »Export Citation »E-mail Citation »

                                      This seminal article remains the most highly cited conceptual work on the stress process model in the Alzheimer’s disease caregiving literature to date. Conceptualizes the relationship between primary and secondary stressors and health outcomes for caregivers to persons with Alzheimer’s disease. Importantly, this model has been adapted widely for stress process research with diverse caregiver subpopulations. Available online for purchase or by subscription.

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                                      • Whitlatch, Carol J., Katherine Judge, Steven H. Zarit, and Elia Femia. 2006. Dyadic intervention for family caregivers and care receivers in early-stage dementia. Gerontologist 46:688–694.

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                                        A notable development in caregiving research has been the increased attention placed on the caregiver–care receiver dyad as the focus of intervention, particularly in dementia care. This article describes the Early Diagnosis Dyadic Intervention program, an example of a highly structured protocol that conceptualizes couples as partners, rather than as caregivers and care receivers. Available online for purchase or by subscription.

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                                        • Wisniewski, Stephen R., Steven H. Belle, David W. Coon, et al. 2003. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Project design and baseline characteristics. Psychology and Aging 18:375–384.

                                          DOI: 10.1037/0882-7974.18.3.375Save Citation »Export Citation »E-mail Citation »

                                          Describes the original intervention protocol for the first phase of REACH. This landmark randomized control trial evaluated a multicomponent psychosocial and behavioral intervention for caregivers to persons with Alzheimer’s dementia. Outcomes targeted included reducing caregiver burden and depression. Many subsequent articles on REACH I and REACH II have followed in the literature. Available online for purchase or by subscription.

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                                          Other Chronic and Life-Threatening Illnesses

                                          Much scientific literature on caregiving follows a disease model and approaches the study of caregiver groups in relation to the trajectory of specific medical diagnoses. Beyond Alzheimer’s as the dominant category of disease-specific caregiver literature, there is a diverse body of research on many other disease categories of chronic and life-threatening illness, including cancer, advanced heart disease, neurological disorders, AIDS/HIV, and mental illness as examples. Biegel, et al. 1991, an instructive book examining caregiver issues in relation to specific chronic diseases, provides a useful conceptual foundation. Talley, et al. 2012 is a volume on caregiving with respect to families providing cancer-related care. Caregivers to community-residing persons with chronic illnesses often cope with issues related to the provision of home health care services. Levine, et al. 2006 focuses on the transition point from formal home care to family-directed care with respect to stroke patients. Finally, caregivers to persons with chronic illnesses are at risk for a host of negative health consequences related to self-health. Schulz and Beach 1999 is a seminal study demonstrating caregiving as a risk factor for mortality in the landmark Caregiver Health Effects Study.

                                          • Biegel, David, Esther Sales, and Richard Schulz. 1991. Family caregiving in chronic illness: Alzheimer’s disease, cancer, heart disease, mental illness and stroke. Newbury Park, CA: SAGE.

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                                            Provides a foundation vis-à-vis understanding family caregiving in the context of chronic illnesses. Individual chapters on the five diagnoses listed in the title provide overviews illustrating the relationship between caregiver issues and specific chronic disease trajectories. Though the literature for each category of illness has advanced since this book was published, the text provides a useful conceptual introduction.

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                                            • Levine, Carol, Steven M. Albert, Alene Hokenstad, Deborah E. Halper, Andrea Y. Hart, and David A. Gould. 2006. “This case is closed”: Family caregivers and the termination of home health care services for stroke patients. Milbank Quarterly 84:305–331.

                                              DOI: 10.1111/j.1468-0009.2006.00449.xSave Citation »Export Citation »E-mail Citation »

                                              This article presents findings from a study on caregivers to persons with stroke and brain injury in relation to home care service provision. The authors examine the transition from formal home care services to family-directed care, an under-researched yet critically important transition point within the scope of severe chronic illness. Policy and practice implications are discussed. Available online for purchase or by subscription.

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                                              • Schulz, Richard, and Scott R. Beach. 1999. Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association 282.23: 2215–2219.

                                                DOI: 10.1001/jama.282.23.2215Save Citation »Export Citation »E-mail Citation »

                                                A landmark article from the Caregiver Health Effects Study finding that older spousal caregivers who reported emotional strain had higher mortality risk compared to non-caregiving controls.

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                                                • Talley, Ronda C., Ruth McCorkle, and Walter F. Baile. 2012. Cancer caregiving in the United States: Research, practice, policy. New York: Springer.

                                                  DOI: 10.1007/978-1-4614-3154-1Save Citation »Export Citation »E-mail Citation »

                                                  A Springer series text, this volume provides a comprehensive description of caregiving issues within the specialized area of cancer care. Essential reading for those interested in up-to-date interdisciplinary literature to inform the practice of oncology social work.

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                                                  End-of-Life Care

                                                  The field of palliative and end-of-life care has developed a vital literature on the clinical needs of family caregivers. The authors of Altilio and Otis-Green 2011 (cited under Reference Works) have edited a superb volume on social work practice; the book contains a broad spectrum of essential information on research and clinical work with families in palliative care. Fineberg and Bauer 2011 and Glajchen 2011 in Altilio and Otis-Green 2011 (cited under Reference Works) are two notable chapters focused on family caregiving issues, though the volume as a whole is worth perusing for additional valuable content on family issues. Hebert and Schulz 2006 and Hauser and Kramer 2004 provide excellent overviews on family caregiving in palliative care in articles geared toward a clinical medicine readership. Schulz, et al. 2008 provides a brief practice article on screening caregivers at high risk for complicated grief.

                                                  • Fineberg, Iris Cohen, and Amy Bauer. 2011. Families and family conferencing. In Oxford textbook of palliative social work. Edited by Terry Altilio and Shirley Otis-Green, 235–249. New York: Oxford Univ. Press.

                                                    DOI: 10.1093/med/9780199739110.001.0001Save Citation »Export Citation »E-mail Citation »

                                                    Informed by developmental, life course, and systems perspectives, this chapter presents the family as social system in the context of end-of-life care. Practice skills relevant to working with family caregivers are described, illustrated by case examples. A section on conducting family conferences will be helpful to students and beginning practitioners.

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                                                    • Glajchen, Myra. 2011. Caregivers in palliative care: Roles and responsibilities. In Oxford textbook of palliative social work. Edited by Terry Altilio and Shirley Otis-Green, 223–233. New York: Oxford Univ. Press.

                                                      DOI: 10.1093/med/9780199739110.001.0001Save Citation »Export Citation »E-mail Citation »

                                                      An overview of family caregivers’ roles and needs in the context of palliative care. Includes a concise description of social work interventions specific to working with families of palliative care patients. Presents useful brief case narratives and learning exercises to illustrate practice concepts concerning working with families and interdisciplinary teams.

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                                                      • Hauser, Joshua M., and Betty J. Kramer. 2004. Family caregivers in palliative care. Clinics in Geriatric Medicine 20:671–688.

                                                        DOI: 10.1016/j.cger.2004.07.003Save Citation »Export Citation »E-mail Citation »

                                                        A conceptual overview of the phenomenon of family caregiving in palliative care, written for a clinical medicine readership yet relevant to interdisciplinary perspectives. Presents an adaptation of the stress process model for end-of-life caregiving, and summarizes literature on caregiver interventions and bereavement. Available online for purchase or by subscription.

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                                                        • Hebert, Randy S., and Richard Schulz. 2006. Caregiving at the end of life. Journal of Palliative Medicine 9:1174–1187.

                                                          DOI: 10.1089/jpm.2006.9.1174Save Citation »Export Citation »E-mail Citation »

                                                          Beyond a concise summary of the role of stressors and appraisals with respect to caregiver health outcomes in end-of-life care, this article introduces specific caregiver populations by diagnosis, including Alzheimer’s disease, stroke, cancer, congestive heart failure, and HIV/AIDS. Available online for purchase or by subscription.

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                                                          • Schulz, Richard, Randy Hebert, and Kathrin Boerner. 2008. Bereavement after caregiving. Geriatrics 63:20–22.

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                                                            A brief practice-oriented article focused on identifying caregivers who are at risk for negative postbereavement outcomes. Includes screening questions to consider in clinical interviews with caregivers and a discussion of symptoms of complicated grief.

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                                                            Developmental Disabilities

                                                            Family caregivers to individuals with developmental disabilities represent a critically underserved service population. Identifying the needs, experiences, and coping of this subset of caregivers has been the focus of an important developing body of research. McCallion 2006 offers a useful introductory overview on the topic. Greenberg, et al. 1993 reports findings from a major study conducted on aging families caring for an adult family member with disabilities in the community.

                                                            • Greenberg, Jan S., Marsha Mailick Seltzer, and James R. Greenley. 1993. Aging parents of adults with disabilities: The gratifications and frustrations of later-life caregiving. Gerontologist 33:542–550.

                                                              DOI: 10.1093/geront/33.4.542Save Citation »Export Citation »E-mail Citation »

                                                              This study compares aging mothers of adult children with mental illnesses and aging mothers of adult children with mental retardation on measures of frustration and gratification. The findings reported are part of a landmark study on aging families caring at home for an adult family member with disabilities. Available online for purchase or by subscription.

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                                                              • McCallion, Philip. 2006. Older adults as caregivers to persons with developmental disabilities. In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 363–370. New York: Oxford Univ. Press.

                                                                DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                Presents an overview of key issues with respect to the needs of aging family caregivers to persons with developmental disabilities. References essential literature on the study of caregivers to persons with intellectual and developmental disabilities.

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                                                                Long-Term Care

                                                                Nursing home placement is a transition point negotiated by many family caregivers, one that involves distinct stressors and experiences associated with the institutionally based care of a loved one. Buhr, et al. 2006; Nikzad-Terhune, et al. 2010; and Gaugler, et al. 2004 provide valuable insight into various critical aspects of family members’ adjustment to nursing home care. The author of Bern-Klug 2010 recently edited a volume on the role of palliative care in nursing homes. Kolb 2007 is a unique and indispensable edited volume focused on social work practice in the nursing home setting with eight groups of ethnically, racially diverse elders and their family members. See also Davis and Waites 2008 (cited under Selected Demographic Variables Addressed in Caregiving Research: Race, Ethnicity, and Culture) for additional literature on African American caregivers and long-term care.

                                                                • Bern-Klug, Mercedes, ed. 2010. Transforming palliative care in nursing homes: The social work role. New York: Columbia Univ. Press.

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                                                                  A recently published volume on the emerging practice of palliative care in nursing homes.

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                                                                  • Buhr, Gwendolen T., Maragatha Kuchibhatla, and Elizabeth C. Clipp. 2006. “Caregivers” reasons for nursing home placement: Clues for improving discussions with families prior to the transition. Gerontologist 46:52–61.

                                                                    DOI: 10.1093/geront/46.1.52Save Citation »Export Citation »E-mail Citation »

                                                                    This study identifies predictors of nursing home placement among caregivers of patients with dementia. Many predictors reported were evident a year prior to placement. The findings are particularly useful to develop screening or assessment questions for caregivers in need of placement counseling and referral. Available online for purchase or by subscription.

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                                                                    • Gaugler, Joseph E., Keith A. Anderson, Steven H. Zarit, and Leonard I. Pearlin. 2004. Family involvement in nursing homes: Effects on stress and well-being. Aging and Mental Health 8:65–75.

                                                                      DOI: 10.1080/13607860310001613356Save Citation »Export Citation »E-mail Citation »

                                                                      Specific caregiver stressors have been associated with institutionalization of a relative with dementia. This study examines relatives’ continued involvement post–nursing-home placement in relation to caregiver psychosocial adaptation. The article provides vital insight into the stress process model vis-à-vis institutionalization transitions. Available online for purchase or by subscription.

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                                                                      • Kolb, Patricia J., ed. 2007. Social work practice with ethnically and racially diverse nursing home residents and their families. New York: Columbia Univ. Press.

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                                                                        This essential text provides a multicultural perspective on practice with nursing home residents and family members across eight distinct groups of ethnically, racially diverse elders. The caregiving context is addressed from a sociocultural perspective in each chapter, providing insight and useful references on culturally competent practice with families in long-term care settings.

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                                                                        • Nikzad-Terhune, Katherina A., Keith A. Anderson, Robert Newcomer, and Joseph E. Gaugler. 2010. Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care 49:734–752.

                                                                          DOI: 10.1080/00981381003635296Save Citation »Export Citation »E-mail Citation »

                                                                          Caregivers of persons with dementia may experience a critical transition point from at-home care to nursing home placement. This change may involve modifying prior responsibilities and adapting to new roles, leading to a distinctly different set of potential caregiver stressors. These authors studied this important transition point to determine predictors of caregiver burden following nursing home placement. Available online for purchase or by subscription.

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                                                                          Selected Demographic Variables Addressed in Caregiving Research

                                                                          Family caregivers vary widely in terms of salient demographic characteristics. Notable streams of literature focus upon important contextual dimensions of the caregiving experience, including gender, relationship type (e.g., spouses, adult children, grandparents), race, ethnicity, culture, and sexual minority status, to name but a few key variables.

                                                                          Gender and Relationship

                                                                          Hooyman and Gonyea 1995, a book on the gendered nature of family care, draws from feminist perspectives and includes a critical focus on policy. Dwyer and Coward 1992 also deals with gender-related dimensions of family care and provides useful methodological and theoretical critiques of the research literature. Both of these well-cited sources, though older citations, offer essential background and foundation knowledge. Brody 2004 presents a detailed treatment of the phenomenon of “women in the middle,” examining the roles of women as primary caregivers. Kropf and Yoon 2006 and Joslin 2002 provide excellent starting points for exploring the subject of grandparents raising grandchildren. Kramer and Thompson 2002 presents indispensable research and critical analysis on the role of men as family caregivers. Pinquart and Sörensen 2006, a meta-analysis, and Yee and Schulz 2000, a narrative analysis, both study gender differences among family caregivers on stressors, resources, health, and psychiatric morbidity.

                                                                          • Brody, Elaine M. 2004. Women in the middle: Their parent-care years. 2d ed. New York: Springer.

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                                                                            A seminal book focused on the role of women in family care, with particular attention to the role of women as primary caregivers to older adults. The scope of this book covers research-informed chapters on caregiving daughters and their siblings, married daughters, caregiving daughters-in-law, and daughters without partners.

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                                                                            • Dwyer, Jeffrey W., and Raymond T. Coward, eds. 1992. Gender, families, and elder care. Newbury Park, CA: SAGE.

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                                                                              A seminal foundation text on the intersection of gender and family caregiving. Many of the chapters address fundamental conceptual, theoretical, and methodological issues with respect to conceptualizing and interpreting gender differences in caregiving research. Though the literature has advanced since this book appeared, the text provides important background.

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                                                                              • Hooyman, Nancy R., and Judith Gonyea. 1995. Feminist perspectives on family care: Policies for gender justice. Thousand Oaks, CA: SAGE.

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                                                                                This book examines family caregiving from a feminist perspective and provides an essential critical analysis of the gendered nature of family care.

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                                                                                • Joslin, Daphne, ed. 2002. Invisible caregivers: Older adults raising children in the wake of HIV/AIDS. New York: Columbia Univ. Press.

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                                                                                  Older grandparents and older surrogate parents raising HIV-affected and HIV-infected children represent a critically underserved population from the point of view of research and the service system. This book provides a comprehensive introduction to this topic, with engaging chapter contributions by leading scholars and practitioners.

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                                                                                  • Kramer, Betty J., and Edward H. Thompson Jr., eds. 2002. Men as caregivers: Theory, research, and service implications. New York: Springer.

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                                                                                    This book serves as an indispensable gateway to theoretical and methodological analyses on male caregiving research and service use. Chapters critically summarize research on caregiver husbands, sons, and brothers. Also, a notable chapter on fathers as caregivers to children with mental retardation and mental illness, gay male caregiving, and AIDS caregiving stress.

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                                                                                    • Kropf, Nancy P., and Eunkyung Yoon. 2006. Grandparents raising grandchildren: Who are they? In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 355–362. New York: Oxford Univ. Press

                                                                                      DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                      A concise overview introducing empirical literature on caregiver grandparents who raise grandchildren.

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                                                                                      • Pinquart, Martin, and Silvia Sörensen. 2006. Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences 61:P33–P45.

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                                                                                        This meta-analysis examines 229 empirical studies on gender differences in caregiver stressors, social resources, and health. Notably, the authors found small differences between men and women on the key outcomes, though gender differences in burden, depression, and number of tasks were considered important findings. Stress and coping framework employed. Available online for purchase or by subscription.

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                                                                                        • Yee, Jennifer L., and Richard Schulz. 2000. Gender differences in psychiatric morbidity among family caregivers: A review and analysis. Gerontologist 40:147–164.

                                                                                          DOI: 10.1093/geront/40.2.147Save Citation »Export Citation »E-mail Citation »

                                                                                          This narrative literature review examines thirty empirical studies on gender differences and psychiatric morbidity. Women caregivers reported more psychiatric symptoms compared to their male counterparts across virtually all the studies. The authors employ the stress process model to contextualize the findings. Useful summary tables included. Available online for purchase or by subscription.

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                                                                                          Race, Ethnicity, and Culture

                                                                                          Family caregiving occurs in a sociocultural context and, therefore, research on dimensions of race, ethnicity, and culture remains essential to our evolving understanding of caregiving as a phenomenon. This bibliography section highlights selected articles and book chapters of interest as beginning entry points into this literature. However, this section is neither exhaustive nor representative of the growing body of research that has developed around caregiving vis-à-vis different racial, ethnic, and cultural groups. See selected citations in the Intervention section of this bibliography for additional references on the role of race, ethnicity, and culture in designing appropriate interventions. See also selected references on aspects of race, ethnicity and culture in the sections of this bibliography under Selected Categories of Caregiver Populations: Long-Term Care and Lesbian, Gay, Bisexual, and Transgender (LGBT) Caregiving. Dilworth-Anderson, et al. 2002, in a comprehensive and widely cited literature review, offers a critical synthesis of caregiving research findings on race, ethnicity, and culture. This article offers a superb starting point and framework. Pinquart and Sörensen 2005 provides a research synthesis on ethnic differences in caregiving by using a meta-analytic approach. Aranda and Knight 1997 provides an excellent synthesis of older literature on Latino caregiving. The more recently published Magaña 2006 also offers a useful overview on Latino caregiving populations. Several authors in this section address essential aspects of the research on African American caregivers, including Carlton-Laney 2006; Dilworth-Anderson, et al. 2002; and Davis and Waites 2008.

                                                                                          • Aranda, Maria, and Bob G. Knight. 1997. The influence of ethnicity and culture on the caregiver stress and coping process: A sociocultural review and analysis. Gerontologist 37:342–354.

                                                                                            DOI: 10.1093/geront/37.3.342Save Citation »Export Citation »E-mail Citation »

                                                                                            Though an older citation, this article remains essential reading for understanding key aspects of ethnicity and culture in relation to the caregiver stress and coping model. The authors focus specifically on the Latino caregiver literature in terms of identified stressors, appraisals, social supports, and coping strategies. Constructs of acculturation and familism are addressed. Available online for purchase or by subscription.

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                                                                                            • Carlton-Laney, Iris. 2006. Rural African American caregiving. In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 381–389. New York: Oxford Univ. Press

                                                                                              DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                              This chapter presents a caregiver paradigm comprised of the domains of personal, informal, formal, and professional resources to frame the experiences of older African Americans and their caregivers in rural settings. Informed by a historical and sociocultural perspective, the author includes a concise review of emerging literature.

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                                                                                              • Davis, Molly Everett, and Cheryl Waites. 2008. Intergenerational caregiving: Family and long-term care. In Social work practice with African-American families: An intergenerational perspective. Edited by Cheryl Waites, 143–167. New York: Routledge.

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                                                                                                This book chapter gives an overview of family caregiving in the African American family. The authors discuss intergenerational caregiving in African American families, with consideration given to long-term care settings and end-of-life care.

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                                                                                                • Dilworth-Anderson, Peggye, Ishan Canty Williams, and Brent E. Gibson. 2002. Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980–2000). Gerontologist 42:237–272.

                                                                                                  DOI: 10.1093/geront/42.2.237Save Citation »Export Citation »E-mail Citation »

                                                                                                  A comprehensive narrative literature review synthesizing caregiving research on race, ethnicity, and culture conducted across a two-decade span. A seminal contribution, widely cited. The authors organize research findings into the domains of social support, negative effects, coping, and cultural effects. Directions for future research, extensive tables, and references are invaluable. Available online for purchase or by subscription.

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                                                                                                  • Magaña, Sandra. 2006. Older Latino family caregivers. In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 371–380. New York: Oxford Univ. Press.

                                                                                                    DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                                    This chapter addresses caregiver well-being, stress, and coping; family support; service utilization; and intervention within Latino cultural contexts. The cultural value of familism is presented, in conjunction with a critical review and summary of existing literature. Includes useful citations on research with specific Latino caregiver groups, including Puerto Ricans, Cuban Americans, and Mexican Americans.

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                                                                                                    • Pinquart, Martin, and Silvia Sörensen. 2005. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist 45:90–106.

                                                                                                      DOI: 10.1093/geront/45.1.90Save Citation »Export Citation »E-mail Citation »

                                                                                                      This meta-analytic review examines 116 empirical studies to evaluate differences in stressors, resources, and psychological outcomes with respect to three categories: African America, Hispanic, and Asian American caregivers. Comprehensive reference list. Available online for purchase or by subscription.

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                                                                                                      Lesbian, Gay, Bisexual, and Transgender (LGBT) Caregiving

                                                                                                      The author of Fredriksen-Goldsen 2007 edited a special issue of a journal that serves as an excellent entry point into literature on LGBT caregiving issues. Selected articles from the special issue appear in this section. Coon 2007 addresses intervention for LGBT caregivers. Evans-Campbell, et al. 2007 reports findings from a caregiving study with Native and two-spirit communities. Fredriksen-Goldsen and Hooyman 2007 critiques the state of research in LGBT caregiving. Williams and Freeman 2007 covers transgender issues with respect to caregiving. Fredriksen-Goldsen, et al. 2009 in another journal reports findings from a dyadic study conducted with chronically ill midlife and older gay men, lesbians, and bisexuals. Finally, this section includes a link to the National Resource Center on LGBT Aging for additional online resources.

                                                                                                      • Coon, David W. 2007. Exploring interventions for LGBT caregivers: Issues and examples. Journal of Gay and Lesbian Social Services 18.3–4: 109–128.

                                                                                                        DOI: 10.1300/J041v18n03_07Save Citation »Export Citation »E-mail Citation »

                                                                                                        Summarizes survey research and sociocultural contexts of LGBT caregiving. The article further describes an evidence-informed intervention framework for supporting LGBT caregivers that employs cognitive and behavioral skill building within an empowerment perspective. Available online for purchase or by subscription.

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                                                                                                        • Evans-Campbell, Teresa, Karen I. Fredriksen, Karina L. Walters, and Antony Stately. 2007. Caregiving experiences among American Indian two-spirit men and women: Contemporary and historical roles. Journal of Gay and Lesbian Social Services 18.3–4: 75–92.

                                                                                                          DOI: 10.1300/J041v18n03_05Save Citation »Export Citation »E-mail Citation »

                                                                                                          A qualitative study exploring caregiving narratives among individuals who identify as members of Native and two-spirit communities. In-depth interviews were conducted with two-spirit Native leaders in the United States; the interviews employed participatory action research and a feminist interpretive method of narrative analysis. The findings illuminate an understanding of diverse cultural caregiving experiences among Native persons. Available online for purchase or by subscription.

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                                                                                                          • Fredriksen-Goldsen, Karen I., ed. 2007. Caregiving with pride. Birmingham, NY: Haworth.

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                                                                                                            This volume, copublished simultaneously as Journal of Gay and Lesbian Social Services 18, presents empirical research on diverse sexual minority populations. Topics including adult gay, lesbian, and bisexual persons as caregivers and care receivers, HIV/AIDS caregiving, transgender caregiving issues, and caregiving experiences among American Indian two-spirit men and women. See citations of individual articles in this section on LGBT Caregiving.

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                                                                                                            • Fredriksen-Goldsen, Karen I., and Nancy R. Hooyman 2007. Caregiving research, services, and policies in historically marginalized communities: Where do we go from here? Journal of Gay and Lesbian Social Services 18.3–4: 129–145.

                                                                                                              DOI: 10.1300/J041v18n03_08Save Citation »Export Citation »E-mail Citation »

                                                                                                              Presents an empirically and theoretically informed critique in support of advancing the state of caregiving research for historically marginalized communities with respect to sexual orientation and gender identity. Includes perspectives on developing interventions, services, and policies to meet LGBT care recipients’ and caregivers’ needs. Available online for purchase or by subscription.

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                                                                                                              • Fredriksen-Goldsen, Karen I., Hyun-Jun Kim, Anna Muraco, and Shawn Mincer. 2009. Chronically ill midlife and older lesbians, gay men, and bisexuals and their informal caregivers: The impact of the social context. Sexuality Research and Social Policy 6:52–64.

                                                                                                                DOI: 10.1525/srsp.2009.6.4.52Save Citation »Export Citation »E-mail Citation »

                                                                                                                This article explores associations among measures of discrimination, caregiver-care recipient relationship, and psychological distress among chronically ill midlife and older gay men, lesbians, and bisexuals. The study employs a notable dyadic approach to examining caregiving within a social context, and presents policy implications with respect to the findings. Available online for purchase or by subscription.

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                                                                                                                • National Resource Center on LGBT Aging.

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                                                                                                                  Services and Advocacy for GLBT Elders (Sage) in conjunction with the U.S. Department of Health and Human Services Administration on Aging and a host of private foundations and community organizations launched this comprehensive information clearinghouse for providers and consumers to access information to support LGBT elders and their caregivers.

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                                                                                                                  • Williams, Mark E., and Pat A. Freeman. 2007. Transgender health: Implications for aging and caregiving. Journal of Gay and Lesbian Social Services 18.3–4: 93–108.

                                                                                                                    DOI: 10.1300/J041v18n03_06Save Citation »Export Citation »E-mail Citation »

                                                                                                                    This overview presents a critical discussion of the literature on transgender health, aging, and caregiving. Transgender care recipients and caregivers are notably under-represented in caregiver literature. This article identifies important avenues of inquiry for further exploration. Available online for purchase or by subscription.

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                                                                                                                    Assessment

                                                                                                                    Gaugler, et al. 2000 is a most useful reference chapter covering in exceptional detail the major standardized assessment tools in the caregiving literature. For the reader interested in locating standardized measures on caregiving and in gaining an understanding of conceptual and methodological issues of measurement in this area, there is no better place to start. The author of Levine 2004 has edited a readable volume containing several chapters on critical aspects of assessment, including Feinberg 2004 and Reinhard 2004. Zarit and Zarit 2007 focuses on assessment regarding family caregiving in the dementia field. Montgomery and Kwak 2008 describes TCARE, a standardized assessment tool.

                                                                                                                    • Feinberg, Lynn Friss. 2004. Recognizing the work of family and informal caregivers: The case for caregiver assessment. In Family caregivers on the job: Moving beyond ADLs and IADLs. Edited by Carol Levine, 67–98. New York: United Hospital Fund of New York.

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                                                                                                                      An overview and critique of the role of caregiver assessment in research, policy, and practice. Presents historical background on the origins of caregiver assessment and the development of the caregiver burden construct. Compares and contrasts standardized assessment tools developed inside and outside the United States.

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                                                                                                                      • Gaugler, Joseph E., Rosalie A. Kane, and Joan Langlois. 2000. Assessment of family caregivers of older adults. In Assessing older persons: Measures, meaning and practical applications. Edited by Robert L. Kane and Rosalie A. Kane, 320–359. Oxford and New York: Oxford Univ. Press.

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                                                                                                                        Required reading on measurement and assessment in the field of family caregiving. The chapter critically reviews the most important standardized assessment tools in caregiving research. Includes a detailed table describing instrument characteristics, validity, and reliability. Offers invaluable discussion on conceptual issues vis-à-vis measuring caregiver impact.

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                                                                                                                        • Levine, Carol, ed. 2004. Family caregivers on the job: Moving beyond ADLs and IADLs. New York: United Hospital Fund of New York.

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                                                                                                                          Caregiving literature typically employs standardized measures of Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) to assess care receivers’ objective deficits and, by inference, caregivers’ related needs. This book identifies critical limitations to the ADL/IADL assessment approach by identifying the multidimensional contexts in which family caregiving takes place. Alternative models of caregiver assessment are proposed.

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                                                                                                                          • Montgomery, Rhonda, and Jung Kwak. 2008. TCARE: Tailored caregiver assessment and referral. Journal of Social Work Education 44 (Suppl.) (Fall): 59–64.

                                                                                                                            DOI: 10.5175/JSWE.2008.773247713Save Citation »Export Citation »E-mail Citation »

                                                                                                                            Description and evaluation of a six-step standardized assessment tool and referral protocol theoretically supported by caregiver identity theory.

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                                                                                                                            • Reinhard, Susan. 2004. The work of caregiving: What do ADLs and IADLs tell us? In Family caregivers on the job: Moving beyond ADLs and IADLs. Edited by Carol Levine, 37–65. New York: United Hospital Fund of New York.

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                                                                                                                              Provides historical insight into how Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) evolved as measures in the literature. Given the dominant place of ADLs and IADLs related to measuring caregiver burden and care demands, a critique vis-à-vis strengths and limitations is warranted. Policy implications are discussed.

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                                                                                                                              • Zarit, Steven H., and Judy M. Zarit. 2007. Family caregiving. In Mental disorders in older adults: Fundamentals of assessment and treatment. 2d ed. Edited by Steven H. Zarit and Judy M. Zarit, 321–350. New York: Guilford.

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                                                                                                                                This chapter focuses on clinical assessment and intervention with family caregivers to persons with dementia. Presents a succinct review of the literature on the needs of caregivers and identifies specific evidence-based treatment modalities relevant to clinical practice.

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                                                                                                                                Intervention

                                                                                                                                Sörensen, et al. 2002, a meta-analysis on caregiving interventions, provides a useful framework for understanding the types of caregiving interventions evaluated in the literature. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH) and New York University Caregiver Intervention (NYUCI) studies described in Selected Categories of Caregiver Populations: Alzheimer’s Disease and Dementia are two of the most widely known evidence-based intervention protocols. See Alzheimer’s Disease and Dementia for references to these major studies. For a discussion about culturally sensitive interventions to caregivers to persons with dementia, see Napoles, et al. 2010. For a solid introduction to psychoeducational models specific to working with Latino caregivers, see Aranda and Morano 2007. Crewe and Chipungu 2006 presents an overview of support services for family caregivers. The authors of Toseland, et al. 2011 have recently edited and published a highly useful text describing a wide spectrum of essential education and support services for caregivers. Chadiha, et al. 2004 describes an empowerment-based group intervention employed with African American women caregivers.

                                                                                                                                • Aranda, Maria P., and Carmen Morano. 2007. Psychoeducational strategies for Latino caregivers. In Dementia and social work practice: Research and intervention. Edited by Carole B. Cox, 189–203. New York: Springer.

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                                                                                                                                  Few studies have tested the effectiveness of interventions for racial and ethnic populations of caregivers to persons with dementia. This chapter offers an invaluable critical analysis of the literature on caregiver psychoeducation in a cross-cultural context, and details specific dimensions of treatment relevant to developing and evaluating culturally sensitive intervention models.

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                                                                                                                                  • Chadiha, Letha A., Portia Adams, David E. Biegel, Henry L. Zucker, Wendy Auslander, and Lorraine Gutierrez. 2004. Empowering African American women informal caregivers: A literature synthesis and practice strategies. Social Work 49:97–108.

                                                                                                                                    DOI: 10.1093/sw/49.1.97Save Citation »Export Citation »E-mail Citation »

                                                                                                                                    This article conceptualizes an empowerment practice group model for working with African American women caregivers. Drawing from stress and coping and empowerment frameworks, the authors identify specific intervention strategies informed by the literature and grounded in a social work practice perspective. Available online for purchase or by subscription.

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                                                                                                                                    • Crewe, Sandra Edmonds, and Sandra Stukes Chipungu. 2006. Services to support caregivers of older adults. In Handbook of social work in health and aging. Edited by Barbara Berkman and Sarah D’Ambruoso, 539–549. New York: Oxford Univ. Press.

                                                                                                                                      DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                                                                      The chapter explains the constellation of family-caregiver services available through the aging network, including a description of the National Family Caregiver Support Program. Describes social work roles at the micro, midlevel, macro, and professional levels relevant to developing interventions and programs to address caregivers’ needs.

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                                                                                                                                      • Napoles, Anna M., Letha Chadiha, Rani Eversley, and Gina Moreno-John. 2010. Developing culturally sensitive dementia caregiver interventions: Are we there yet? American Journal of Alzheimer’s Disease and Other Dementias 25:389–406.

                                                                                                                                        DOI: 10.1177/1533317510370957Save Citation »Export Citation »E-mail Citation »

                                                                                                                                        This article presents two systematic reviews to identify ethnic differences among African American, Latino, and Chinese American caregivers for persons with dementia and to identify psychosocial support interventions among these groups. Essential review and critique of recent intervention literature regarding ethnically diverse caregiver populations. Available online for purchase or by subscription.

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                                                                                                                                        • Sörensen, Silvia, Martin Pinquart, and Paul Duberstein. 2002. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 42:356–372.

                                                                                                                                          DOI: 10.1093/geront/42.3.356Save Citation »Export Citation »E-mail Citation »

                                                                                                                                          This meta-analysis provides a useful framework for conceptualizing specific types of caregiver interventions and outcomes addressed by prior literature. The authors evaluated the effectiveness of caregiver interventions across seventy-eight selected studies. This article provides an essential orientation to intervention research in the family caregiving field. Available online for purchase or by subscription.

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                                                                                                                                          • Toseland, Ronald W., David H. Haigler and Deborah J. Monohan, eds. 2011. Education and support programs for caregivers: Research, practice, policy. New York: Springer.

                                                                                                                                            DOI: 10.1007/978-1-4419-8031-1Save Citation »Export Citation »E-mail Citation »

                                                                                                                                            This Springer series text addresses important topics on caregiver education and support programs, such as accessibility, service utilization, and current practices in health care. Notable chapters on telehealth approaches; caregiver support groups; and ethnic, cultural, and gender dimensions regarding providing education and support. Effectiveness research is also addressed.

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