Katie Cebula
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.
Authors
Amanda Gillooly
Laura K. B. Coulthard
Professor Deborah Riby deborah.riby@durham.ac.uk
Professor
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 |
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Files
Published Journal Article (Advance Online Version)
(1.1 Mb)
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Publisher Licence URL
http://creativecommons.org/licenses/by/4.0/
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