A scoping review of the lived experiences of individuals with Huntington's disease, their informal caregivers and offspring
Van Baar,Cathelijn Kalkers,Kristel Bolt,Sascha Roos,Raymund Gobbens,Robbert
Van Baar,Cathelijn
Kalkers,Kristel
Bolt,Sascha
Roos,Raymund
Gobbens,Robbert
Abstract
Background: Huntington's disease has a disruptive effect on entire families. While previous reviews have examined lived experiences of individuals with Huntington's Disease, their informal caregivers, or their offspring, none have provided a comprehensive overview that integrates these three perspectives. Design: A scoping review. Aims: Providing an integrated view and a holistic understanding of the multifaceted challenges faced by families affected by Huntington's disease. Methods: We operationalised the lived experiences using the keywords: "barriers", "facilitators" and "needs". We extracted and thematically analysed data from 35 articles searched from 1993 to 2023. Results: Twelve themes were identified, organised into three dimensions: (1) Having the Disease: encompassing the symptoms and progression of the disease; (2) Family Dynamics: reflecting the challenges of living in a household affected by Huntington's disease; and (3) Outside World: describing relationships and interactions with relatives, friends, health services and wider social structures. Conclusions: The dimensions and related experiences of all three perspectives are intertwined. These experiences are mutually reinforcing, with fluid shifts in perspective occurring between family members. While the needs of family members overlap, they also diverge, highlighting the need for a systemic, family-centred approach to address the evolving challenges faced by all family members.
Description
Date
2025-05
Journal Title
Journal ISSN
Volume Title
Publisher
Research Projects
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Journal Issue
Keywords
Huntington's disease, Barriers, Caregiver, Family, Lived experiences, Nursing
Citation
Van Baar, C, Kalkers, K, Bolt, S, Roos, R & Gobbens, R 2025, 'A scoping review of the lived experiences of individuals with Huntington's disease, their informal caregivers and offspring', Journal of Advanced Nursing. https://doi.org/10.1111/jan.17024