ArticleHealth psychology and behavioral medicine2025
Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.
Article in Health psychology and behavioral medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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1 citing paper in PubMed.
- Support interventions for families facing parental life-threatening illness - A scoping review.Palliative & supportive care · 2026Article
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3 authors.
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Abstract
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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