Whose voice is it anyway? Adults with intellectual disabilities and future planning: A scoping review of qualitative studies

Abstract

Background: Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary. Method: A scoping review of qualitative studies (2012–2022) was undertaken to identify which perspectives are present in research on adults with intellectual disabilities and future planning, and to examine key aspects of their future planning experience. Results: The perspectives of parents and siblings predominate in the research. Those of adults with intellectual disabilities and service providers are underrepresented. Conclusions: The views of adults with intellectual disabilities need to be elevated in future planning and they need to be meaningfully involved in planning processes. Focus on the experiences of service providers is likewise needed.