Huntington’s disease caregivers: A qualitative exploration of caregivers experience

Caring for a family member with Huntington’s disease can be complex and challenging. This study set out to investigate the research question: what are the experiences of Huntington’s disease caregivers. In this qualitative study, 11 adult caregivers (6 female and 5 male, aged 49–77 years), of a family member with Huntington’s disease participated in semi-structured interviews, using either video-link or telephone. Data analysis was informed by interpretative phenomenological analysis. The analysis identified three themes related to the caregiver experience: The impact on the caregiver; The impact of the genetic risk; Accessing health care & support services. Complexities of caregiving are compounded by the lack of services available to Huntington’s disease patients, as well as the lack of knowledge and expertise related to the disease. This study highlights the need for enhanced knowledge of the disease in community services, along with access to psychological and multidisciplinary support.