Caregivers’ perspectives and experiences on the transition of youth with intellectual disabilities or autism out of residential care

This paper presents the findings of a longitudinal study conducted in South Africa that investigated the perspectives and experiences of informal caregivers in assisting youth with intellectual disabilities and/or autism as they transitioned from residential care towards young adulthood. This was a component of a larger study that examined the transition of six care-leavers. This paper focuses only on the interviews conducted with caregivers. The study utilised a qualitative research design to uncover participants’ experiences and perceptions. The three informal caregivers of youth with intellectual disabilities and/or autism were each interviewed thrice over 18 months. Five core themes emerged from the thematic analysis of caregiver interview data: inadequate transitional planning and preparation; limited aftercare opportunities; barriers to accessing formal support; caregiver unmet support needs; and the value of informal relational support. Caregivers play a crucial role in the lives of care-leavers with intellectual disabilities and/or autism as they transition towards young adulthood. However, they often report insufficient support, compounded by challenges in transitional planning and gaps in aftercare support for the young person in their care.