Differences in Service Needs, Time Demands, and Caregiving Burden among Parents of Persons with Mental Retardation across the Life Cycle

By Haveman, Meindert; van Berkum, Gonda et al. | Family Relations, October 1997 | Go to article overview

Differences in Service Needs, Time Demands, and Caregiving Burden among Parents of Persons with Mental Retardation across the Life Cycle


Haveman, Meindert, van Berkum, Gonda, Reijnders, Rene, Heller, Tamar, Family Relations


Differences in Service Needs, Time Demands, and Caregiving Burden Among Parents of Persons With Mental Retardation Across the Life Cycle*

This study compared the service needs, time demands, and subjective burden of parent caregivers of children and adults with mental retardation across the life cycle. It also examined the extent that family and child characteristics and service use contributed to parents' time demands and burden. This population-based study in the Netherlands included 2,573 parents of children with mental retardation living at home. There were significant differences by age of the child in demographic characteristics of the family, child's level of disability and adaptive functioning, service use, caregiving time demands, and subjective caregiving burden. The level of education of parents, the child's level of disability, and service use were associated with parental time demands and caregiving burden.

Key Words: burden, caregiving, disability, mental retardation, lifespan.

In planning a shift towards family-centered and communitybased services for persons with mental retardation (Henning, 1993), basic information is needed about the objective and subjective demands on families and on their formal service needs (Haveman, 1993). A major aim of this study conducted in the Netherlands was to compare the service needs, objective caregiving demands and subjective burden among parents of persons with mental retardation across the life cycle. A second aim was to examine the extent that family and child characteristics and service use contribute to the objective and subjective burden experienced by these families. Life Span Differences in Caregiving

This study uses a life span perspective on family caregiving, which recognizes that caregiving is a life-long commitment and that over time caregiving roles and stressors are likely to have both stable and dynamic aspects. In examining the caregiving experience at different periods in the life span, we need to take into account developmental transitions occurring for the person with a disability and the caregiver. Carter & McGoldrick (1988) distinguished 6 stages in the life cycle of families, of which four occur after having children: (a) families with young children; (b) families with older children; (c) launching of children and postparental stage; and (d) families in the last life stage. Each stage differs significantly with regard to goals and consequences compared to earlier and later stages in the family life.

Having a child with mental retardation is a non-normative event and raising a child with a disability is a non-normative process. Examining caregiving from a developmental perspective that takes into account the degree to which the life stage tasks faced by families are normative, Farber (1975) theorized that as the child moves towards adulthood, caregiving becomes less normative and more taxing. This discrepancy between what is normative and non-normative is exacerbated if the child is highly dependent. As the child reaches adolescence and adulthood, parents may still be involved in parenting tasks more typical in families with younger children. Also, the stage of launching out of the home is delayed or may not occur, as offspring with mental retardation often continue to live with elderly parents. Two contrasting theories emanating from the research on caregiving for elderly relatives, also can offer a framework for understanding family adaptation over the life span. The "wear and tear" hypothesis predicts that the long-term caregiving demands and accumulation of stressors results in depletion of physical and psychological resources (Johnson & Catalano, 1983). On the other hand, the "adaptational" hypothesis suggests better adjustment to the caregiving role over time (Townsend, Noelker, Deimling, & Bass, 1989).

There is very little research examining the adjustment of families across the life span and the results to date are still contradictory (Heller, 1993). …

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