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A phenomenological study on the experiences of aging parents caring for their adult son/daughter with a disability Petrica, Joni Elizabeth

Abstract

With the continued movement toward deinstitu tionalization, and community—based health care, professionals will see a rise in the number of aging parents caring for their adult son/daughter with a disability. Little research exists to understand the needs of aging parents, and what is available reflects quantitative studies that primarily focus on parents’ feelings of stress and burden, and their future planning concerns for the adult child. In order to discover and describe the totality of aging parents’ experiences caring for an adult child with a disability, this study used a phenomenological approach to elicit qualitative information. Both mothers and fathers were interviewed, and the results indicated that the presence of a child with a disability in the lives of these parents has contributed positively to parents’ sense of self, their perceptions of themselves as parents, and the meanings and interpretations they give to their lives in spite of - or as a result of — having cared for a disabled child. Parents’ accounts of their experiences with professionals also suggested the value of social workers listening to parents’ needs and concerns in the context of a lifetime of struggles and demands, achievements and accomplishments. In this way, social workers are better able to help parents address their own developmental needs of aging by providing sensitive and timely programs and services that address parents’ unique challenges raising an adult child with a disability.

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