The experiences of children with Williams syndrome and their non-disabled siblings of their relationship

Katie Cebula*, Amanda Gillooly, Laura K. B. Coulthard, Deborah M. Riby, Richard P. Hastings

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: This study explored sibling relationships from the perspective of children with Williams syndrome (WS) and their nondisabled (ND) siblings. Background: WS, a genetic condition with a profile that can include intellectual disabilities, hypersociability and anxiety, might be predicted to impact sibling relationships, but this has not been qualitatively explored from the children's perspective. Methods: Thirty-nine children (6–17 years; 20 male, 19 female) participated: 20 sibling dyads in which one child had WS and the other was ND (one child with WS did not participate). Children were interviewed about experiences of their relationship. Data were analyzed with reflexive thematic analysis. Results: Siblings described multifaceted relationships, in which love and positivity were overtly evident and embedded in the reciprocity of sibling expertise and support. Children skillfully navigated the spaces and boundaries of their relationship across home, school, and friendship contexts, with parent support. ND siblings' knowledge of WS supported interactions, relationships, and advocacy, but some children with WS felt their sibling lacked knowledge of the challenges of WS. Conclusions: The WS profile was woven through multidimensional relationships. Implications: Findings have implications for how parents are supported to help siblings navigate relationships and learn about WS, and how schools support WS sibling relationships.

Original languageEnglish
Pages (from-to)1-19
Number of pages19
JournalFamily Relations: Interdisciplinary Journal of Applied Family Science
Early online date23 Oct 2024
DOIs
Publication statusE-pub ahead of print - 23 Oct 2024

Keywords / Materials (for Non-textual outputs)

  • developmental disability
  • qualitative
  • sibling relationship
  • thematic analysis
  • Williams syndrome

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