A comparative analysis of adult siblings' perceptions toward caregiving

Meghan M. Burke, Thomas Fish, Kathy Lawton

Research output: Contribution to journalArticlepeer-review


Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n 5 25) to siblings who anticipated being caregivers (n 5 17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

Original languageEnglish (US)
Pages (from-to)143-157
Number of pages15
JournalIntellectual and developmental disabilities
Issue number2
StatePublished - 2015


  • Adult siblings
  • Caregiving
  • Focus groups
  • Intellectual and developmental 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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