Abstract
This is a small, qualitative study about the lived experiences of adult siblings of individuals with intellectual and/or developmental disabilities (I/DD). Previous research has focused primarily on the caregiving experiences of parents with adult children with I/DD. However, as people are living longer, healthier lives, it is increasingly becoming the role of adult siblings to support their brother or sister with I/DD. The purpose of this study was to explore the lived experience of siblings of adults with I/DD regarding decision-making around quality of life and end-of-life. The goals of this study were to 1) contribute to the literature on the relationships of siblings and adults with I/DD, 2) discover ways to support families of adults with I/DD, 3) add to the conversation on end-of-life care for adults with I/DD and 4) develop ideas for further research in these areas that will support social workers who work with individuals who have I/DD and their families. This study included nine participants who are currently involved in supporting their sibling with I/DD. Findings of this study include that the kind of support siblings provide is guided by, yet different from, the support provided by their parents. Also, that siblings use their relationship and values to guide decisions about quality of life and, ultimately, end-of-life for their sibling with I/DD.