Academic journal article Family Relations

Exploring the Impact of Culture and Acculturation on Older Families Caregiving for Persons with Developmental Disabilities

Academic journal article Family Relations

Exploring the Impact of Culture and Acculturation on Older Families Caregiving for Persons with Developmental Disabilities

Article excerpt

Exploring the Impact of Culture and Acculturation on Older Families Caregiving for Persons With Developmental Disabilities*

Philip McCallion,** Matthew Janicki, and Lucinda Grant-Griffin

A series of focus group meetings were held with African American, Chinese American, Haitian American, Hispanic/Latino American, Korean American, and select Native American communities. Cultural issues in caring for persons with a developmental disability were discussed. Differences were found in the following themes: (I) how disability is perceived, (2) who are the family, (3) who provides care, (4) how the family makes decisions, (5) what family members expect of each other, (6) what support families receive from friends and community, (7) why the family moved, (8) cultural values important to family members, (9) family willingness to accept services from outside the family, (10) the family's first language, and (11 ) families' concerns about service providers. A range of adherence was observed as most prevalent among each of the cultures and across generations and age groups. Implications for the development and delivery of services are discussed.

Key Words: developmental disabilities, diversity, family caregiving, focus groups, service use.

Increasing attention has been paid to the needs of older families caring at home for family members with a developmental disability. Concerns have been raised that many families are not connected to services and have not planned for the future (Smith, Fullmer, & Tobin, 1994; Wood, 1993). Indeed, agency workers in both the aging and developmental disabilities service systems have reported that families are often resistant to their efforts, or that they themselves are unprepared for the issues that these families present (McCallion & Tobin, 1995; Sutton, Sterns, Schwartz, & Roberts, 1992). More limited attention has been paid to families from diverse cultures caring for family members with developmental disabilities. It is not known if their caregiving experiences are similar or different from other families, or whether prevalent emphases in the service system on permanency and future planning are appropriate or effective for families from diverse cultures. To address these questions, findings will be reported on a series of focus groups held with African American, Chinese American, Haitian American, Hispanic/Latino American, Korean American, and select Native American communities. The focus groups were held to gain an understanding of the uniqueness of the caregiving experiences of specific cultural groups, reasons for lower service use and the extent of cross-cutting concerns around aging, disability, caregiving and future planning. They were also a means to build trust, and to provide a context for future research.

Background

Informal caregiving is the primary mode of care in the U.S. for people who are aging, including those persons with a developmental disability (Doty, 1986; Seltzer, & Krauss, 1994). Although positive and rewarding aspects of providing care to a family member have been identified, stressful and burdensome aspects of caregiving have also been documented (AnthonyBergstone, Zarit, & Gatz, 1988; Biegel, Sales, & Schulz, 1991; Seltzer & Krauss, 1994).

Key Concerns for Caregiving Families

Converging demographic trends are raising concerns both about the continued viability of relying on informal caregivers to meet long-term care needs and about the best ways to support families who are continuing to care for dependent adult family members (Doty, 1986). Those demographic trends include the growing numbers of persons who are aging, including persons with a developmental disability (Jacobson, Sutton, & Janicki, 1985; U.S. Senate, 1987-88). Also, increasing rates of divorce, geographic dispersal, and lower birth rates are reducing the number of potential family caregivers (Crystal, 1982). Furthermore, growing workforce participation and later child birth among the largest group of family caregivers, women, are increasing tensions between work, child care, and adult care responsibilities (Horowitz, 1985; Kiecolt-Glaser, Dura, Speicher, Trast, & Glaser, 1991; Lang & Brody, 1983). …

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