Understanding the experiences of family carers of individuals with Huntington’s Disease

Paper 1 is a systematic literature review of 10 published research papers exploring how family and informal caregivers of individuals with Huntington’s Disease (HD) experience services. Papers included within the review were considered to be of moderate to good quality. Key findings related to carers’ experiences of seeking information, a lack of knowledge of HD amongst professionals, and the availability and accessibility of services. Implications for future research and the limitations of the review are discussed.

Paper 2 is an empirical study exploring the experiences of spouses of individuals with HD, with a particular focus on identity, the relationship and the impact on family life. Data was analysed using Interpretive Phenomenological Analysis (IPA). Participants experienced a transition from spouse to carer, losing their own identity within their caring role and experiencing changes in sexual intimacy, roles and responsibilities. Participants shared the challenges of family life and raising children.

Paper 3 is an executive summary written for spouses, partners and other adult family caregivers of individuals with HD to inform them of the research project. The paper was shared with group members at a HD support group. Group members read and commented on the paper, ensuring accessibility. The background, method, findings, limitations, clinical implications and directions for future research are summarised.