ArticleJournal of advanced nursing2026
A Scoping Review of the Lived Experiences of Individuals With Huntington's Disease, Their Informal Caregivers and Offspring.
Article in Journal of advanced nursing, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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5 authors.
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Abstract
backgroundHuntington'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.
designA scoping review.
aimsProviding an integrated view and a holistic understanding of the multifaceted challenges faced by families affected by Huntington's disease.
methodsWe 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.
resultsTwelve 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.
conclusionsThe 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. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.
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