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

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.

A framework for interconnected benefits of peer support for family members of people with disability

“…Sweet et al, 2016;Meade et al, 2017) and also by family members of people with disability, including parents (Kerr & McIntosh, 2000;Shilling et al, 2013;Bell et al, 2013) and siblings (D'Arcy et al, 2005;McCullough & Simon, 2011;Roberts et al, 2015). Such support exists in a context in which both parents and siblings may provide significant support and care to their family member with disability (Leiter et al, 2004;Mauldin & Saxena, 2017). Peer support for these family members may be "part of a system of care" (Meadan et al, 2010:27), where they also draw on other formal supports such as respite care or short breaks and other assistance with care responsibilities and personal well-being.…”