Families' perspectives on the process of community transitions of individuals with severe intellectual and developmental disabilities

J Intellect Dev Disabil. 2024 Mar;49(1):57-66. doi: 10.3109/13668250.2023.2193135. Epub 2023 Apr 19.

Abstract

Background: Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones' community transition process.

Method: Eight family members of persons with severe or profound intellectual and developmental disabilities formerly residing at the complex care facility of St.Amant participated in semi-structured interviews. Interview transcripts were analysed thematically using an iterative inductive process and constant comparative method.

Results: Three main themes emerged from the family members' accounts of their loved ones' community transitions process: 1) families' initial reactions, 2) strengths, and 3) challenges.

Conclusions: Initial reactions of family members to learning about the community transitions process were varied. Family members' perspectives inform deinstitutionalisation efforts by highlighting facilitators such as adequate involvement, and barriers such as, unanticipated delays, to the community transitions process.

Keywords: Community transition; deinstitutionalisation; family perspectives; intellectual and developmental disabilities; qualitative research.

MeSH terms

  • Adult
  • Deinstitutionalization*
  • Developmental Disabilities* / psychology
  • Family* / psychology
  • Female
  • Humans
  • Intellectual Disability* / psychology
  • Interviews as Topic
  • Male
  • Middle Aged
  • Qualitative Research