Experience of Siblings of Persons with Developmental Disabilities

DOI
  • OTAKI Reiko
    Faculty of Humanities and Social Sciences, Tokyo Metropolitan University

Bibliographic Information

Other Title
  • 成人期にある知的障害を伴わない発達障害者のきょうだいの体験に関する研究
  • An Examination of the Developmental Change Process
  • 9年後のペアデータの重ね合わせを通した変化の検討

Abstract

This study aimed to examine the adulthood experiences of siblings of individuals with developmental disabilities but without any intellectual disability. A qualitative analysis of the developmental changes in the experiences of siblings was conducted, without compromising diversity. To obtain data, the author interviewed two older sisters of a person with a disability, twice over a nine-year period. The sisters’ narratives were arranged at the same point in time on the horizontal axis to examine the diversity of siblings. For the vertical axis, the sisters’ narratives were repeated nine years later. This procedure aimed to capture changes in the siblings’ experiences and narratives. The results revealed themes that characterize adulthood, conflicts over the disclosure of disabilities, conflicts over fertility treatment and the heritability of disabilities, and conflicts over unexpected issues related to the aging of parents. The findings suggest that siblings experience the difficulty of positioning themselves as siblings and caretakers while seeking to distance themselves from their families at different times.

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