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Abstract:
Williams syndrome (WS) is a genetically based neurodevelopmental disorder caused by a deletion of a segment of chromosome 7, which contains approximately 28 different genes (Bhattacharjee, 2005). Individuals with WS typically present with a distinctive cognitive and behavioral profile, characteristic facial and neuroanatomical features, and a number of complex medical issues. They have also been described as 'hypersocial' or driven to interact socially with others (Jones et al., 2000). The purpose of this study was to understand and report on the maternal subjective experience of parenting a child with WS with a focus on maternal perceptions of child attachment. This exploration was guided by an awareness of three factors that significantly shape the experience of parenting including mothers' attachment experiences in childhood, parent- and child-related stress, and gratification in the parenting role. Interview-based qualitative research methods were utilized to examine maternal perceptions and the subjective and complex experience of parenting. Eleven mothers of children with WS participated in a semi-structured interview and completed four parent-report measures and a demographic questionnaire. The interview data was analyzed using the constant comparative method (Maykut & Morehouse, 1994), which allowed for the identification of salient themes in the mothers' experience. In regard to the mother-child relationship and perceived attachment, all of the mothers reported having a close bond with their child with WS that was made stronger by the sociability characteristic of the syndrome and/or their child's significant health issues. The match or mismatch between child characteristics and maternal attachment representations also shaped mothers' perceptions of the relationship. Per parent report, a majority of the children with WS exhibited attachment behaviors that were atypical or not age appropriate for children in middle childhood. Additional themes were organized into the following categories: overall experience of parenting a child with WS, sources of stress, reactions to the diagnosis and child's disability, coping strategies, functioning of the family system, and advice for clinicians and parents of children with WS. Thus, the results and clinical implications of this study may serve to inform service providers, improve treatment, and offer validation and support for parents of children with WS.
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