Supporting the Next Generation of Caregivers: Service Use and Needs of Adult Siblings of Individuals With Intellectual Disability

As a result of gains in health care, people with intellectual disability are outliving their parents, creating an unprecedented need to support this population. Siblings represent the longest lasting family relationships and often become caregivers for their brothers and sisters with intellectual disability when parents pass away. Given the growing number of siblings who are assuming this caregiver role, it is important to understand the challenges and opportunities they face. This project explored the needs of adult sibling caregivers and the service system's efficacy in meeting these needs. Using focus groups and a phenomenological approach, this study explored siblings' experiences with the service system, including barriers, needs, and how services impact their well-being. Findings suggest that siblings who have greater access to services and supports experience greater well-being and ability to support their brothers and sisters with intellectual disability.