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

Abstract

AbstractObjectiveThis study explored sibling relationships from the perspective of children with Williams syndrome (WS) and their nondisabled (ND) siblings.BackgroundWS, 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.MethodsThirty‐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.ResultsSiblings 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.ConclusionsThe WS profile was woven through multidimensional relationships.ImplicationsFindings have implications for how parents are supported to help siblings navigate relationships and learn about WS, and how schools support WS sibling relationships.