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The experiences of children with Williams syndrome and their nondisabled siblings of their relationship

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

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Authors

Katie Cebula

Amanda Gillooly

Laura K. B. Coulthard

Richard P. Hastings



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.

Citation

Cebula, K., Gillooly, A., Coulthard, L. K. B., Riby, D. M., & Hastings, R. P. (online). The experiences of children with Williams syndrome and their nondisabled siblings of their relationship. Family Relations: Interdisciplinary Journal of Applied Family Science, https://doi.org/10.1111/fare.13102

Journal Article Type Article
Acceptance Date Sep 17, 2024
Online Publication Date Oct 23, 2024
Deposit Date Sep 30, 2024
Publicly Available Date Oct 30, 2024
Journal Family Relations: Interdisciplinary Journal of Applied Family Science
Print ISSN 0197-6664
Electronic ISSN 1741-3729
Publisher Wiley
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1111/fare.13102
Keywords thematic analysis, Williams syndrome, qualitative, sibling relationship, developmental disability
Public URL https://durham-repository.worktribe.com/output/2899645
This output contributes to the following UN Sustainable Development Goals:

SDG 10 - Reduced Inequalities

Reduce inequality within and among countries

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