New information & support resource for people with inherited MND
June 2022: A new online resource has now been made available at the website healthtalk.org.
Euan MacDonald Centre members at the University of Aberdeen have led on a project about family experiences of inherited MND. They have used their research to develop a new resource, which is hosted on the award-winning website healthtalk.org.
On healthtalk.org you can find out about different health conditions by watching other people share their stories. The website is available 24/7 and is freely accessible. It provides a lasting source of information and support to patients and families and is used in training for healthcare professionals.
This study, conducted by PhD student Jade Howard and Prof Louise Locock, involved interviews with 35 people from across the UK about what it is like to live with inherited MND in the family, and how they manage the issues and decisions that come with this knowledge.
Areas discussed in the interviews included how people found out about inherited MND in the family; decisions around genetic testing; options around having children; and family support and communication.
The new section of the website covers summaries on these topics and other important areas, illustrated with video, audio and written clips from interviews. Each person who took part in the study also has a profile with more information about them and their story.
The new resource can be found at: healthtalk.org/Familial-MND
The healthtalk.org resource was made in collaboration with the University of Oxford and the Dipex charity. It was supported by an advisory panel, which included family advisors, clinicians, researchers and a representative from the MND Association. It was funded by the MND Association, with PhD funding from the University of Aberdeen. Please get in touch with Jade Howard if you would like any further information on j.howard.18@abdn.ac.uk.
Related links
You may also be interested in the general MND resource on healthtalk.org