Adult Sibling Roles and Relationships with People with Significant Disabilities

Siblings of people with IDD have the longest life relationship with and anticipate performing key roles in their brother or sister’s life, but they do not feel prepared to do so.  Therefore, this phenomenological study examined adult sibling roles and relationships.  Siblings are integral members of the family system and active players in the vision of equity, opportunity, and inclusion for people with IDD.     After this session, participants will be able to: a) Summarize the importance and need for supports of adult siblings of people with intellectual and developmental disabilities.  These siblings are seen as the next generation of caregivers and advocates (Heller & Kramer, 2009). More research is needed to understand the characteristics, needs, and outcomes of adult siblings of people with IDD (Hodapp, Glidden, & Kaiser, 2005).  b) Identify the formal and informal roles that adult siblings play in the lives of people with intellectual and developmental disabilities. Findings of the study showed that siblings held both informal and formal roles in relation to their brother or sister with IDD, including friend, caregiver, advocate, leisure support, and legal representative.  c) Recognize key contextual factors that affect adult sibling relationships.  Findings of the study showed that the contexts that impacted their relationships included distance, time spent together, personal characteristics including communication and behaviors, family dynamics, and the availability and/or quality of professional services.    d) Identify strategies and supports that will help adult siblings enact key roles and enhance their relationships with their brothers and sisters with intellectual and developmental disabilities.  Implications about how families and professionals may support siblings of people with IDD are presented.  Suggestions are provided to enhance the sibling relationship and to support the formal and informal roles of the siblings.

Zach Rossetti, Sarah Hall