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Abstract

Individuals with disabilities increasingly live at home. This study focuses on experiences of adult siblings (aged 18 years and older) in the United States who have a brother or sister with an intellectual/developmental disability. It is based on qualitative survey data (n = 224). We coded narratives of siblings’ experiences and identified themes, correlating themes with demographic characteristics. The major finding was that narratives of the youngest age group (aged 18-25 years) had the highest number of direct care codes. This group of siblings also had the highest number of codes indicating that their lives were enhanced by their brother or sister. To account for this, we utilize the mutual exchange theory of care from sociology and a social model of disability. As a result, we suggest a richer theoretical understanding of care and disability that can capture these nuances, and comment on some of the historical tensions between disability studies and caregiving.

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Mutual Exchange: Caregiving and Life Enhancement in Siblings of Individuals With Developmental Disabilities

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