Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities

Chungeun Lee, Meghan M. Burke, Claire R. Stelter

Research output: Contribution to journalArticle

Abstract

Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads (N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.

Original languageEnglish (US)
Pages (from-to)198-211
Number of pages14
JournalIntellectual and developmental disabilities
Volume57
Issue number3
DOIs
StatePublished - Jun 1 2019

Keywords

  • Family support
  • Future planning
  • Siblings of individuals with disabilities

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Education
  • Developmental and Educational Psychology
  • Community and Home Care
  • Psychiatry and Mental health

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