A Scoping Review of the Lived Experiences of Individuals With Huntington's Disease, Their Informal Caregivers and Offspring

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. Patient or Public Contribution: No Patient or Public Contribution.