Caregiving Roles of Siblings of Adults With Intellectual and Developmental Disabilities: A Systematic Review

Chung eun Lee, Meghan M. Burke

Research output: Contribution to journalArticlepeer-review


As individuals with intellectual and developmental disabilities (I/DD) grow older, many siblings anticipate becoming caregivers for their brothers and sisters with I/DD. However, there is little extant research about the caregiving roles of siblings. The purpose of this review was to extend the literature by conducting a systematic literature review about sibling caregiving. To better understand this population, a systematic literature review was conducted about adult siblings of individuals with I/DD to examine the definition of caregiving, sibling caregiving experiences, and correlates of sibling caregiving. In total, 29 relevant studies were identified. Results indicate that there is no consistent definition of sibling caregiving. Further, adult sibling caregivers reported caregiving benefits and challenges. The literature is also mixed with respect to the correlates of sibling caregiving. It is necessary to conduct additional research to understand sibling caregiving for individuals with I/DD. Implications for future research, policy, and practice are discussed.

Original languageEnglish (US)
Pages (from-to)237-246
Number of pages10
JournalJournal of Policy and Practice in Intellectual Disabilities
Issue number3
StatePublished - Sep 2018


  • adult siblings
  • caregiving
  • future planning
  • intellectual disabilities
  • sibling roles

ASJC Scopus subject areas

  • Health(social science)
  • Public Health, Environmental and Occupational Health

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