Synthesizing the Family Caregiving Studies: Implications for Service Planning, Social Policy, and Further Research
Lefley, Harriet P., Family Relations
Family caregiving is a product of social policy generated by multiple factors: clinical, fiscal, legal, and humanistic. In previous times families were always the caregivers of their disabled members; it is only in recent history that resources such as large institutions were developed as alternatives. We have now returned to considerable family caregiving, but with a profound change in the cultural ambiance. Today there are many competing demands and alternative roles for caregivers. There is substantial documentation, as noted by Heller, Hsieh, and Rowitz (1997), that the majority of caregivers are women. In contemporary societies there are few social rewards and occasional disapproval when females invest their lives in what is generally perceived as a self-sacrificing role with constricted boundaries. There may be more resources and services for the disabled person, but attenuated natural support systems and inadequate respite for caregivers. It is in this historical context that we look at the results of the present research.
Although much has been written about caregiving for persons with Alzheimer's disease, the literature on parents caring for adult disabled children is relatively sparse. This issue of Family Relations deals with caregiving of two populations: persons with mental retardation and persons with mental illness. The introduction by editors Seltzer and Heller (1997), and the research presented here, suggest the complexity and variability of the caregiving experience. As the editors note, there are several major influences involved.
At a minimum, individual characteristics of the principals are in fluid interaction with the social and cultural context, the type of disability, and demographic and life span variables. The experiences of both the disabled person and the caregiver are a function of multiple conditions nested within the life cycle of the individual and the family system, and the course and stage of the disability. In their panoramic view of the life course, Cook, Cohler, Pickett, and Beeler (1997) describe how cohort membership and social change may affect how disability is experienced by persons with schizophrenia and mental retardation, and by their family caregivers.
The Life Course Perspective
Seltzer and Heller cogently point out the need for a "stress and coping" theoretical perspective in assessing the caregiving experience, a framework previously emphasized by Hatfield (1987) with respect to mental illness. As the editors note, caregivers' capabilities in coping with the stresses of parenting a child with disability are dependent on their personal strengths and their social resources and support systems. But these variables are nested in historical time. Time is related to everything-the changing cultural context, the stage of the family life cycle, the years of investment in caregiving, and the chronological age of the principals. Age is clearly a correlate of the needs and behaviors of the disabled child or adult, and the health and energy levels of the caregivers. But changes and vicissitudes in ordinary family life are equally relevant. Co-existing family relationships, other illnesses with competing demands, act-of-God misfortunes, unexpected good fortune, prosperity or job stresses, moving or migration, deaths of loved ones or other existential losses-a range of longitudinal life events may affect how caregiving is experienced. This makes the life-course perspective offered by Cook et al. (1997) especially salient. As they point out, life-course study enables us to make sense of the impact and meaning of personal adversity, as well as the external and internal coping resources marshaled at particular points in time and over the life span.
In discussing the burdens of caregiving for children with mental retardation across the life span, Heller et al. (1997) have counterposed the adaptational hypothesis-caregiving gets easier over the years-to the "wear and tear" hypothesis of cumulative stress. …