Patterns of Adult Sibling Role Involvement with Brothers and Sisters with Intellectual and Developmental Disabilities

Abstract

Adult siblings of individuals with intellectual and developmental disabilities (IDD) are increasingly involved in family care, yet, adult siblings consistently report needing more information and support to engage in these roles. Knowing more about which roles siblings are likely to assume may help address this need. Thus, we further examined the most common roles assumed by adult siblings (N = 171), the demographic variables related to an increased likelihood of assuming specific roles, and the potential clusters in patterns of role assumption. We transformed qualitative data from an online survey with four open-ended questions about sibling relationships and roles into quantitative presence data for role-related codes in order to examine relationships between assumed roles and demographic variables. The most common roles assumed by adult siblings were friend, advocate, caregiver, and sibling. Key demographic variables related to role assumption included disability severity, emotional closeness, and age of the brother or sister with IDD. Cluster analyses indicated five potential categories of adult sibling role involvement: Companion, Least Involved, Highly Involved, Needs Focused, and Professional. Implications and future areas of research are shared.