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. In light of the COVID-19 outbreak, interviews will be carried out remotely, using video communication, as well as phone and email interviews.

Interviews 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?

The researchers are interested in hearing from anyone with inherited MND in the family, but are particularly looking to speak to:

• Younger people (i.e. under 40), including those with a grandparent diagnosed with inherited MND

• People with a family history of MND but who have received a negative pre-symptomatic genetic testing result

• People who have a gene linked to inherited MND but who have no other family members who they know have been affected

• People from BAME communities

How can I take part?

Despite the COVID-19 pandemic, researchers are still recruiting participants for this study and would love to hear from people who may be interested in taking part.

If you are interested in taking part, please email Jade Howard, PhD researcher: j.howard.18@abdn.ac.uk 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