Academic journal article Generations

Family Caregiver Self-Identification: Implications for Healthcare and Social Service Professionals

Academic journal article Generations

Family Caregiver Self-Identification: Implications for Healthcare and Social Service Professionals

Article excerpt

Reluctance to acknowledge the caregiver role.

To become a caregiver, we must cross a threshold whose other side is unexplored and often threatening.

-B. W. McLeod

Family members and friends caring for ill and disabled people experience a number of rewards and hardships in managing their caregiving responsibilities. Although many caregivers find their involvement brings them closer to the care recipient and identify other benefits they derive from the caregiving experience (Goldman, 2002), caregivers also experience many negative consequences. These can include loss of employment opportunities (National Alliance for Caregiving/National Center on Women and Aging, 1999), psychiatric illness (Yee and Schulz, 2000), and even death. Given that 71 percent of caregivers nationally report that they arc caring for someone with a long-term or chronic illness (National Alliance for Caregiving/AARP, 1997), providing support to families throughout the course of illness is essential.

But, what happens when the families and friends providing care do not even know they fall under the "caregiver" category? What happens when a spouse providing twenty-four-hour hands-on care for an elderly husband, or a daughter caring for both of her frail parents, does not realize that she is part of a large and growing group-family carcgivers? And how do hcalthcare and social service providers reach those caregivers who may be in need of support and resources but are not even aware that the caregiver support group at the local senior center, for example, is relevant to their situation? This article addresses these questions and describes a program that recognizes die problem and reaches out to caregivers, self-identified or not.

A study by the American Association of Retired Persons (Kutner, 2001) points to the benefits of self-identification for family caregivers-that is, family caregivers defining themselves as such. In telephone interviews with a nationally representative sample of 4,037 adults, it was found that those who identified with die term "caregiver" reported that they were involved in many more activities diat were helpful to them in their management of caregiving responsibilities. In contrast, respondents who did not define themselves as caregivers and yet were performing many of die caregiving tasks were much less likely to be engaged in activities diat were helpful. For example, self-identified caregivers were more likely to talk informally or with healthcare professionals about caring for a family member, to read about caregiving, or to ask for help with die tasks involved. As part of a National Family Carcgivers Association and National Alliance for Caregiving project on caregiver empowerment, Hoffman (2002) concludes that assisting caregivers to self-identify and to reach out for support enhances their ability to handle the caregiving role. Without this self-acknowledgement, caregivers may not take advantage of services that woiud help them and the recipient of their care.


The transition to becoming a family caregiver has been variously described as "drifting" into the role (Finch, 1989, p. 204), moving from "occasional helper" to "something more" (Albert, 1994, p. 18), and "... die point at which concern, visiting and 'helping out5 become . . . caregiving" (Given and Given, 1991, p. 94). Aneshensd and colleagues (1995) view caregiving as a "career," albeit one that few desire. In their comprehensive description of die stages and transitions that family caregivers face, they write, "Whereas people know precisely when they enter a job, entry into caregiving might be gradual and insidious, in some instances, becoming a fait accompli before one is fully aware of it" (p. 21). From these writers' interviews of family caregivers of people suffering from dementia, diey conclude diat die onset of family caregiving has an "amorphous quality" (p. 27) and diat many family caregivers perform die required tasks long before dicy apply die label to diemselves. …

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