Caring as We Age: Familial Relationships of Adults with Intellectual Development Disabilities
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Date
2015-05
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The Ohio State University
Abstract
The project goal was to investigate intersections between age, intellectual developmental disability (I/DD), and family caregiving. Specific aims were to explore changes that aging brings to the caring relationship, and investigate families’ long term plans and the role the individual with I/DD plays in making life plans. In recent years, individuals with I/DD are living longer and, for the first time in history, many are out-living their primary caregivers. Service delivery systems are not keeping up with this changing demographic and little is known about the caring relationships of individuals aging with I/DD. This is an exploratory study, using qualitative methodology to examine these important relationships. The unique contribution is that the study includes the dual perspectives of both the person with I/DD and a family care provider. This project consisted of two semi-structured, adaptive interviews conducted with pairs of individuals with I/DD, aged 50 and older, and a family care provider. Interviews were recorded and transcribed. Data were analyzed using grounded theory techniques to identify themes in the participants' lived experiences. Results provide a better understanding of how aging affects these family relationships, unmet needs, values associated with family involvement in future planning with an aging person experiencing I/DD, and factors contributing to burden and sense of fulfillment in these family caregiving relationships. Results from this study are expected to inform social work and other human service professions about how best to serve and support these family systems over time.
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Keywords
aging, developmental disability, caregiving, siblings, family, older adults