Factors Influencing Wellbeing in Carers of People with Huntington’s Disease.

Ross, Hannah and Eccles, Fiona and Simpson, Jane and Dale, Maria (2025) Factors Influencing Wellbeing in Carers of People with Huntington’s Disease. PhD thesis, Lancaster University.

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Abstract

This thesis explores factors associated with wellbeing in carers of people with Huntington’s disease (HD). Section one presents a systematic literature review examining factors associated with psychological outcomes in HD carers. Six databases were searched (CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus, and Web of Science), resulting in 24 included papers. Caring for someone with more advanced HD, greater functional impairment, and more severe behavioural/psychological difficulties was associated with higher carer burden and carer depression. Indicators of providing higher amounts of care were associated with higher carer burden and lower quality of life. Evidence for other relationships was inconclusive. The findings additionally highlighted the need for further theoretically informed research. Section two describes a cross-sectional quantitative study examining whether satisfaction with family relationships and friendships predicted positive wellbeing and negative feelings in HD carers. It further examined whether these relationship satisfaction variables moderated the relationships between person with HD functional capacity and behavioural/psychological difficulties and carer wellbeing outcomes. The study analysed secondary data from 880 people with HD and their carers participating in Enroll-HD, an international observational cohort study. Hierarchical multiple regression models found that satisfaction with family relationships and friendships were independent predictors of higher positive wellbeing and lower negative feelings in HD carers, after controlling for carer demographics, caring intensity, and person with HD motor and cognitive difficulties, functional capacity, and behavioural/psychological difficulties. These findings were consistent across sub-group analyses for spousal carers, adults caring for their parent, and main carers. However, moderation analyses were non-significant. The importance of relationship satisfaction for wellbeing in HD carers suggests interventions to support this group would benefit from considering both individual and systemic factors. Section three presents a critical appraisal of these projects, including a discussion of their strengths, limitations, and personal reflections on the research process.