Project area or title
End-of-life care in Huntington’s disease: How are we doing, and how can we do better?
Huntington’s disease (HD) is an inherited neurodegenerative condition which manifests in middle age, causing progressive cognitive/physical symptoms and leading to death.
This project aims to understand what person-centred care means in HD, with an emphasis on understanding the needs and preferences of the person and their family carers. Interviews with patients with HD, family carers and professionals will be used to understand experiences, challenges and mental health in end-of-life. From this work, we will produce a ‘theory of change’ which will be used to inform a final stage of complex intervention development in this area, using appropriate co-production methods.
Physical Health and Mental Health Multimorbidity
University of Leicester