Katie Cebula, Amanda Gillooly, Laura K. B. Coulthard, Deborah M. Riby, Richard P. Hastings
{"title":"患有威廉姆斯综合症的孩子和他们正常的兄弟姐妹之间的关系","authors":"Katie Cebula, Amanda Gillooly, Laura K. B. Coulthard, Deborah M. Riby, Richard P. Hastings","doi":"10.1111/fare.13102","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Objective</h3>\n \n <p>This study explored sibling relationships from the perspective of children with Williams syndrome (WS) and their nondisabled (ND) siblings.</p>\n </section>\n \n <section>\n \n <h3> Background</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>The WS profile was woven through multidimensional relationships.</p>\n </section>\n \n <section>\n \n <h3> Implications</h3>\n \n <p>Findings have implications for how parents are supported to help siblings navigate relationships and learn about WS, and how schools support WS sibling relationships.</p>\n </section>\n </div>","PeriodicalId":48206,"journal":{"name":"Family Relations","volume":"74 1","pages":"500-518"},"PeriodicalIF":1.7000,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/fare.13102","citationCount":"0","resultStr":"{\"title\":\"The experiences of children with Williams syndrome and their nondisabled siblings of their relationship\",\"authors\":\"Katie Cebula, Amanda Gillooly, Laura K. B. Coulthard, Deborah M. Riby, Richard P. Hastings\",\"doi\":\"10.1111/fare.13102\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Objective</h3>\\n \\n <p>This study explored sibling relationships from the perspective of children with Williams syndrome (WS) and their nondisabled (ND) siblings.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>The WS profile was woven through multidimensional relationships.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Implications</h3>\\n \\n <p>Findings have implications for how parents are supported to help siblings navigate relationships and learn about WS, and how schools support WS sibling relationships.</p>\\n </section>\\n </div>\",\"PeriodicalId\":48206,\"journal\":{\"name\":\"Family Relations\",\"volume\":\"74 1\",\"pages\":\"500-518\"},\"PeriodicalIF\":1.7000,\"publicationDate\":\"2024-10-23\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/fare.13102\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Family Relations\",\"FirstCategoryId\":\"90\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/fare.13102\",\"RegionNum\":3,\"RegionCategory\":\"社会学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"FAMILY STUDIES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Family Relations","FirstCategoryId":"90","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/fare.13102","RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"FAMILY STUDIES","Score":null,"Total":0}
The experiences of children with Williams syndrome and their nondisabled siblings of their relationship
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.
期刊介绍：
A premier, applied journal of family studies, Family Relations is mandatory reading for family scholars and all professionals who work with families, including: family practitioners, educators, marriage and family therapists, researchers, and social policy specialists. The journal"s content emphasizes family research with implications for intervention, education, and public policy, always publishing original, innovative and interdisciplinary works with specific recommendations for practice.
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