Carers’ Experiences in Families Impacted by Huntington’s Disease: A Qualitative Interpretive Meta-Synthesis

Abstract Caring for an ill family member has been perceived as a chronic stressor. Huntington’s disease (HD) is a chronic neurodegenerative condition lasting up to thirty years, having a powerful impact on families, particularly carers who live with the fear of familial prevalence and genetic transmission. Previous studies have primarily focused on disease management; however, some qualitative studies have concentrated on experiences of family carers. The purpose of this Qualitative Interpretive Meta-Synthesis was to synthesise qualitative studies to explore experiences of family carers of individuals with HD. Purposive sampling was used to select relevant studies. The twelve studies for this Qualitative Interpretive Meta-Synthesis (QIMS) represent experiences of 247carers. Analysis identified five themes: (i) struggles; (ii) impact on carer’s life; (iii) worries; (iv) change in relationship with care-recipient; and (v) social support. Two studies focused on teens; some of their experiences are unique and thus discussed separately from the themes. Findings suggest that there are similarities with carers of other diseases; however, HD may need to be considered individually because of its unique impact on the family system related to genetic transmission to one’s children. Living with this fear can be daunting, heavily influencing decision making and perspectives of most family members, particularly the carer.