How Middle-Aged Siblings of Adults with Intellectual Disability Experience their Roles: a Qualitative Analysis

Hila Avieli

Research output: Contribution to journalArticlepeer-review

Abstract

In many aging families, siblings provide important support to adult brothers or sisters with an intellectual disability. However, this presents new challenges that are affected by past relationships and roles, as well as by the current situation and changes brought on by aging. This study aims to explore the ways in which middle aged typical siblings of adults with intellectual disability shape and perceive their role within the aging family. An interpretive phenomenological analysis was used. Data collection was performed through in-depth, semi-structured interviews with 17 middle aged siblings of adults with intellectual disabilities, followed by a thematic content analysis. Four themes were identified: (1) Sibling multiple roles along the life course; (2) The sibling’s role in the changing alignment of aging families living with disabilities; (3) A retrospective examination of the sibling’s responsibility; and (4) What does the future hold for siblings? Middle aged siblings in the aging family cope with multiple roles, which may elevate caregiving loads. At this point of their life, middle aged siblings come to acknowledge the complexity of their experience that involves love, compassion, stress, and burden at the same time.

Original languageEnglish
Pages (from-to)633-651
Number of pages19
JournalJournal of Developmental and Physical Disabilities
Volume32
Issue number4
DOIs
StatePublished - 1 Aug 2020
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2019, Springer Science+Business Media, LLC, part of Springer Nature.

Keywords

  • Intellectual disability
  • Life course perspective
  • Middle age
  • Qualitative study
  • Sibling role

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Developmental and Educational Psychology

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