Family Caregiving

by

Bradley D. Zodikoff

• LAST REVIEWED: 30 September 2013
• 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/9780195173727.001.0001

  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.

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

  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.

• 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: 10.1002/9781118269640

  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.

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

  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.