Showing papers by "Tamar Heller published in 1997"

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

Abstract: 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). …

Benefits of support groups for families of adults with severe mental illness.

Abstract: Predictors of benefits derived from participating in support groups for families of persons with mental illness were examined. A survey of 131 families indicated that social support resources outside the group, as well as support received from and provided by the group, were associated with information acquired by the participant. Improved relationships with family and the ill relative were predicted by the participant's health and provision of support in the group.

Support, Problem-Solving/Coping Ability, and Personal Burden of Younger and Older Caregivers of Adults With Mental Retardation

Abstract: Relations between service and support utilization, problem-solving/ coping strategies, and level of personal burden experienced by younger and older caregivers were examined. Overall, there were no differences in the number of support services received. However, younger caregivers reported significantly more unmet service needs and rated significantly more of them as a critical or an emergency need. Both groups had highly developed effective problem-solving skills. However, older caregivers were more likely to seek spiritual support and the younger caregivers more apt to mobilize their families to acquire and accept help. Older caregivers experienced significantly less personal burden. Results suggest that younger caregivers are more predisposed toward seeking outside help and have higher expectations of the service system.

Predictors of Support Group Participation among Families of Persons with Mental Illness.

Abstract: Predictors of Support Group Participation Among Families of Persons With Mental Illness* Tamar Heller**, Jennifer A. Roccoforte, and Judith A. Cook Participants (n = 131) and non-participants (n = 59) of support groups for families of persons with mental illness were compared on demographic characteristics, level of disability of the relative with mental illness, and family support resources. Participants used fewer services, provided care to a relative requiring greater assistance, and were more likely to live with the relative. The most common referral source for family support groups was a mental health professional or agency. The main reasons participants reported attending groups were to receive emotional support and to obtain information about mental illness. Reasons for dropping out included not having enough time to attend, no longer helpful, problems with transportation and parking, inadequate leadership, and lack of comfort with other members. Key Words: families, mental illness, support groups. Since deinstitutionalization, the responsibility of long-term care for persons with mental illness has been increasingly assumed by families and communities. While an estimated 40% of individuals with mental illness live with their families (Hatfield & Lefley, 1987), those who live outside the family home often depend on the assistance and continued involvement of their families. Family caregivers are willing, but ill-prepared, for the physical, emotional, and financial burden that the mental illness of a relative places on family resources (see Cook & Pickett, 1988, for a review). Too often, families of persons with mental illness find themselves socially isolated, with little knowledge about the illness and limited coping strategies (Battaglino, 1987). Many believe themselves to be at fault for the relative's condition and feel a sense of guilt and shame. In the past few years, mental health professionals have shifted their view of families from an etiological factor in mental illness to recognizing families as an important resource and advocate for persons with mental illness in our society (Spaniol, Jung, Zipple, & Fitzgerald, 1987). Grella and Grusky (1989), nevertheless, found that family caregivers expressed dissatisfaction with professional service providers both in terms of feeling excluded from treatment planning for the relative and obtaining assistance in coping with their own problems and concerns. One promising intervention which is specifically designed to address the unmet needs of these families are support groups. The recent proliferation of family support groups is part of the larger social movement of self-help and mutual assistance organizations for people affected by a variety of chronic and stressful life circumstances, whose needs have been inadequately addressed by the "ordinary" agencies of assistance (Levine, 1988). Despite the phenomenal growth of family support groups, little is known about who typically joins, the motivational factors for voluntary participation, and what leads some families to discontinue their involvement. This study addresses the differences between participants of support groups for persons with mental illness and non-participants in terms of demographic characteristics, level of disability of the relative with mental illness, and family support resources. The study also provides a qualitative analysis of the reasons family members cite for the decision to affiliate themselves with a support group and why some members drop out. The few studies which have examined differences between family members who join support groups and members who do not, have found significant differences in socio-demographic characteristics and level of functioning of the relative with mental illness. The support group participants are more likely to be White, educated, middle-aged, and middle income. Their relative with mental illness is more likely to be living at home, have a diagnosis of schizophrenia, and have experienced multiple hospitalizations (Battaglino, 1987; Gidron, Guterman, & Hartman, 1990; Norton, Wandersman, Goldman, 1993; Sommer, Williams, & Williams, 1984). …