A Qualitative Study Exploring Ways to Support Parent Caregivers of Adults With Intellectual and Developmental Disabilities

Abstract

Background: Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the critical care that parents provide to their adult children with intellectual and/or developmental disabilities, we aimed to understand the supports parents need to be effective caregivers. Method: Qualitative data (write-in responses) from a national survey completed by 315 parents of adults with intellectual and/or developmental disabilities were analysed using thematic analysis. Results: Four themes emerged from the data, including the need fortangible support, social support, help navigating disability services and resources, and assistance with future planning. Conclusions: Our findings point to the need for financial compensation for parent caregivers of adults with intellectual and/or developmental disabilities, enhanced disability services, and spaces for families to connect and share resources.