Exploring how people with Huntington’s disease experience communication with professionals about assisted dying in the UK
University of Leicester
We are hoping to develop an understanding of the experiences of people with Huntington’s disease when navigating end-of-life conversations with professionals, particularly around assisted dying. We hope that our findings will help to inform the professional Huntington’s disease community on how to best support people affected by Huntington’s disease when discussing death and dying.
We know that people with Huntington’s disease often think about the future, and sometimes think about death and dying. Some people might think about the possibility of ending their life, and some express the wish to access an assisted dying process (which is currently not legal in the UK, but it is in other parts of the world).
We want to learn about whether people who carry the Huntington’s disease gene feel able to talk to their healthcare professionals about death and assisted dying. This would include whether you feel able to talk about it to healthcare workers at all, and how those conversations have gone if you have tried.
We would like to invite you to an interview to discuss these sorts of questions, and this would take place over Teams or by phone (or if you are local to Leicester, we can also arrange to speak in person). If you wouldn’t be comfortable having an interview, we can also discuss conducting the interview by email.
About the study
We are very conscious that this is a very sensitive topic, and we take supporting members of the Huntington’s disease community who choose to speak with us about this very seriously. We will support you throughout the interview, offering you breaks as needed, and you would be able to stop at any time or skip any questions that you weren’t comfortable answering. You’ll be able to ask any questions you have before the interview, or stop the interview to ask questions at any point.
We hope that exploring these questions will help to highlight ways in which people affected by Huntington’s disease can be better supported in future. Please note that we don’t take a position on assisted dying, and we would really like to speak with people who hold a range of viewpoints, so please feel very welcome to speak with us whatever your perspective.
We would really like to speak with you if
- You are an adult living in the UK who has had a positive genetic test for Huntington’s disease (whether you are in the premanifest or symptomatic stages)
- You would like to share your experiences or thoughts about discussing death and assisted dying with healthcare professionals.
Other information
Each participant will receive £20
How do you get involved?
Contact Karolina Harris
Email: kts11@leicester.ac.uk
This study will close on 31 January 2026