Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.

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Tác giả: Sidsel Egedal, Kristin J Billaud Feragen, Siri Hagen Kjolaas

Ngôn ngữ: eng

Ký hiệu phân loại: 784.1886 General principles, musical forms, instruments

Thông tin xuất bản: England : Health psychology and behavioral medicine , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 212676

OBJECTIVE: Huntington's disease (HD) is a rare neurodegenerative condition characterised by progressive symptoms affecting motricity, cognition, neuropsychiatric function and behaviour. HD develops during a period of life in which many live in partnership and have children. HD impacts all family members through its cognitive and psychological symptoms, mid-life onset, long disease trajectory and genetic risk. The aim of the study was to explore how parents without HD experience and manage parenthood when their partner is affected by HD. METHODS: Qualitative interviews with 14 caregivers were analysed using reflexive thematic analysis. RESULTS: Three main themes with corresponding subthemes were identified, followed by an underlying theme: CONCLUSION: Support providers may be unaware of the extensive repercussions HD can have on a family. Acknowledging the central role of partners without HD and their risk of psychological distress is crucial. Exhausted partners may struggle to support their children, which may lead to childhoods overshadowed by HD. For family members to prioritise their own needs, tailored support must be set in place for parents with HD.
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