Healthtalk: Understanding experiences of inherited MND

Improving understanding of people's experiences of inherited MND

This study aims to interview families affected by inherited forms of MND. This will include a focus on understanding what it is like to live with inherited MND, as well as experiences of living at risk for those with a family history of the disease who do not currently have symptoms. It will investigate areas including how families make decisions around issues including predictive genetic testing and reproductive choices, how families communicate around the disease, and how they deal with genetic information.

Interviews will be used to produce a new section on the research-based website www.healthtalk.org. Healthtalk is used to help support others going through similar experiences, and help train doctors, nurses, GPs and other health professionals to understand inherited MND. The new resource will be available from 2022 and will be a lasting source of information and support for families affected by inherited MND.

What does taking part involve?

Individuals who are interested in taking part in an interview will be given a participant information sheet with more information about the Healthtalk project and what an interview would involve. They will have a chance to talk to the researcher who will answer any questions they may have.

Interviews will be collected in collaboration with the Health Experiences Research Group, University of Oxford, and the DIPEx Charity. Interviews will be at the participant’s home or elsewhere if they prefer, at a time that suits them. They will be audio recorded, and some will be video recorded depending on the preferences of the participant. The researcher will encourage the participant to talk about their experiences of inherited MND and issues that are important to them. The length of each interview will vary but most interviews will last at least an hour.

After the interview, the participant will be sent the transcript of their interview, and will have the opportunity to remove any sections they do not want to be used. They will also be sent a copyright form to grant the use of their interview and choose the format that their interview will be available in (video, audio or written).

Study location

UK-wide

Who can take part?

People with inherited MND running in their family, including:

• People who currently have symptoms of an inherited form of MND
• People who may be at risk of developing MND in the future
• Partners and other relatives, including family caregivers.

How can I take part?

If you are interested in taking part, please contact Jade Howard, PhD researcher: j.howard.18@abdn.ac.uk or on 01224 438409 for further information.

Funding

PhD studentship funded by the Institute of Applied Health Sciences, University of Aberdeen. Healthtalk project funded by the MND Association.

Expiry date: October 2020

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262