Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington's disease.

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Tác giả: Ruben L Andriessen, Maud Mj Daemen, Lia de Jager, Annelien A Duits, Mayke Oosterloo, Tanja Peeters, Lucienne B van der Meer, Ruth B Veenhuizen, Renske Wassenberg

Ngôn ngữ: eng

Ký hiệu phân loại: 627.12 Rivers and streams

Thông tin xuất bản: United States : Journal of Huntington's disease , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 691406

BackgroundGrowing up with a parent with Huntington's disease (HD) profoundly impacts children. However, this impact and children's needs are often misunderstood, even by professional services. Even when resources are available, children often feel that their needs are unmet, raising concerns about the adequacy of available guidance and support.ObjectiveThis study aims to offer an in-depth understanding of the multifaceted impact of growing up with a parent with HD, examining the needs for professional guidance on emotional and social aspects, and identifying specific areas where support can be improved to better aid them.MethodsThis retrospective study utilized an exploratory sequential mixed methods design, combining qualitative focus groups (
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