A Rapid Realist Review of Interventions for Parents of Adults with Intellectual/Developmental Disabilities

Abstract

Background and objectives: The lifespan of adults with an intellectual/development disability has increased. Caregiving for these adults is often provided by their parents. Few programs address the needs of these older parents, and even fewer have been reviewed for their effectiveness. Our purpose was to answer the question, what are the conditions and features of support programs or interventions that are effective in improving the psychological and social aspects of the lives of parents of adults who have an intellectual/developmental disability?

Research design and methods: The authors conducted a rapid realist review of interventions for parents of adults with an intellectual/developmental disability. We applied midrange theories of family systems, life course perspective, and caregiving to focus on the participant contexts, program mechanisms, and intervention outcomes that were effective.

Results: The interventions in the review were psychoeducation, financial grants, mindfulness, acceptance and commitment therapy, peer support, expressive arts therapy, and institutional placement. All of the interventions reported some success in improving parent wellbeing.

Discussion: We developed five program theories: "Do not add to my burden", "I am in need of self-care", "My needs change as I age" "My life is complex" and "Peer knowledge and support are valuable to me." We also recommended that programs accommodate parents' time constraints, include other family members and caregivers and address the eventual transition of caregiving from parents to others.

Implications: Program theories and our observations are offered to support the development of new interventions and to improve the effectiveness of existing programs.

Keywords: caregiving; intellectual/developmental disability; parents; support programs.