Academic journal article Social Work

The Caregiver's Memoir: A New Look at Family Support

Academic journal article Social Work

The Caregiver's Memoir: A New Look at Family Support

Article excerpt

A commitment to families is the hallmark of the social work profession, and the emphasis is nowhere more evident than in the intervention of enhancing informal supports in cases of illness and disability. Work with caregiving relatives and friends is no longer confined to health care or gerontological settings; practitioners in child welfare, public assistance, and family services agencies are being challenged by the effects of medical advances on the American family.

Many conditions that would have proved immediately fatal only a decade ago can now be treated, if not yet cured. As a result, millions of individuals are neither fully functional nor totally incapacitated. Through alternating spells of good days and bad days, these individuals continue to perform at work, school, and leisure activities, relying on those close to them to meet some daily needs even as they handle others themselves. Dependence increases slowly but surely, lasting longer than ever before as the trajectory from diagnosis to death is extended. Elderly people are the largest, but by no means the only, age group affected. Further, advances in pediatric medicine, long-term survivorship of people with human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS), and improved management of chronic illnesses increase the likelihood that caregiving, like widowhood, will soon become an expected, if unwelcome, event in the life of every family.

Caregiving Research and Practice

More than three decades of research have confirmed empirically what most practitioners have observed clinically. Families do not abandon their own; care passes between generations throughout the life span, moving from older to younger members in early years and reversing in later years. Families do not need to occupy the same household or live near one another to be intimately connected and involved with each other's well-being. Outside assistance is usually not sought until families have tapped, and often exhausted, their own resources (Hooyman & Lustbader, 1986).

Caregiving is primarily women's work, with men more likely to participate if the illness affects a spouse or mate or if no woman is available (Horowitz, 1985). Most caregivers experience stress (also known as "burden" or "strain") in the performance of their duties, and contextual variables influence the ways in which caregivers appraise and cope with stress. The relationship between caregiving and stress has stimulated a mass of research studies and related theory on such differentials as gender, age, ethnicity, illness, and relationship (Biegel, Sales, & Schultz, 1991; Herz & McGoldrick, 1980; Horowitz, 1985; Lazarus & Folkman, 1984; Mailick, 1979).

In trying to help family members who provide care to a disabled parent, spouse, or child, most social workers follow the dominant paradigm - presuming the presence of stress and guiding their interventions accordingly. Virtually all programmatic responses to caregivers are geared toward stress reduction. Respite services, support groups, day care, and home-delivered meals are predicated on the assumption that caregivers require relief - time away from their responsibilities and education on how to better manage them.

Concluding a book-long comparative analysis of research and theory in cancer, heart disease, mental illness, stroke, and Alzheimer's disease, Biegel et al. (1991) noted, "research on the determinants of caregiver reaction and the effects of interventions to reduce caregiver distress is still clearly in its infancy" (p. 252). Biegel et al. also stated that although some research could benefit from greater generality (greater orientation toward commonalities across illnesses), interventions could benefit from greater specificity: "Service planners often assume that the more services that agencies can offer the better, rather than developing services based upon specific indicators of client and caregiver need" (p. …

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