Older parent carers' stories about their adult children with intellectual disabilities leaving home

Background: People with intellectual disabilities (ID) often receive care from family members, particularly parents. Family carers report positive and negative effects of caring for their relatives with ID. People with ID sometimes move out of their family home, and this transition can be anxiety-provoking and challenging. Older parent carers face difficulties with their health that make it hard to continue caring.

Method: A systematic review of the literature was carried out using two databases. Eleven studies with varied designs (qualitative, mixed methods, and quantitative) were selected for review. The Mixed Methods Appraisal Tool (MMAT) was used to assess quality, and a narrative synthesis was conducted.

Results: Findings indicated that parent carers are anxious and worried about their children with ID moving out of the family home, and often have negative experiences of the moving process. Older parent carers reported issues with their ability to care for their children but wanted to continue doing so.

Discussion: It is recommended that services working with parent carers consider their concerns about care provision and accommodation when helping people with ID to move out.
Recommendations for future research are also made.