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Understanding family experiences of inherited MND: developing a new web resource on Healthtalk.org

Understanding family experiences of inherited MND: developing a new web resource on Healthtalk.org

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Guest researcher blog post written by Jade Howard.

Hello, my name is Jade Howard and I am a second year PhD student from The Health Services Research Unit at the University of Aberdeen. I am working on a study of families’ experiences of inherited forms of MND, which affect around 5-10% of people with the disease. The first part of this study involved an analysis of posts from the MND Association forum, looking at how people talked about being ‘at risk’ of the disease in interactions with others. Specifically, it looked at how people understood personal risk; how they expressed and navigated the uncertainties they face; and how they explored decisions around genetic testing and reproductive choices. This study was used to develop an understanding of some of the issues and concerns important to forum users, and to define areas to explore in later interviews.

The principal focus of the PhD is an interview study with people who have MND running in the family, including people with symptoms, those with an increased chance of developing the disease in the future, and other family members including partners. This aims to help improve knowledge into the experiences of families who have been affected by inherited forms of MND. As well as being shared in my PhD thesis, future publications and reports, we are also working with researchers at the University of Oxford to develop the interviews into a new resource on the website Healthtalk.org. Healthtalk uses video, audio and written clips from qualitative studies of health experiences to provide information and support to patients, families and healthcare professionals. We hope that this will build on the much-used existing Healthtalk section on MND, focusing specifically on the issues unique to those with a family history of the disease.
Jade Howard Healthtalk MND

In January this year, I started travelling around the UK and meeting people who have been affected by inherited MND, to interview them about their experiences. Our study uses a qualitative research method called semi-structured interviewing, which involves having a conversation around peoples’ perspectives and the things that are important to them. The interviews carried out so far have highlighted the diversity of experiences within and between families. Participants have discussed the different ways they found out about the disease and how it has affected their relatives; their experiences of the information and support available to them; and the impact of inherited MND across aspects of their lives, from their emotional well-being and sense of identity to the choices they have made in areas including work, leisure, family life and end of life. Key areas of discussion have included decision making around genetic testing, which is met with a range of views and motivations. Discussions have also centred around views on what the future looks like for people with inherited MND, amidst an ever-shifting research landscape and hopes for a future treatment or cure. The remaining interviews will continue to develop these areas, whilst encouraging participants to explore issues that are important to them.

Because of COVID-19 we have had to stop doing interviews face-to-face, but lots of people have been working hard to find ways to do interviews remotely, consistent with ethical approval and data security requirements. Instead of going into people’s homes, I am now doing interviews primarily through video calls, but also through phone and written exchanges where people have particular communication or technological needs. We are still looking to include more people to make sure as many experiences as possible are represented in our study.

We 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, and those who have considered using reproductive technologies; people with a family history of MND 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; and people from minority ethnic communities.

Jade Howard WFH set up
An image of my homeworking set up (with finally some sunshine in Aberdeen)

If you would like to hear more about the study or are interested in taking part, please contact me at j.howard.18@abdn.ac.uk or visit the MND Association’s Take part in research page. Thank you!

Jade’s PhD studentship is funded by the Institute of Applied Health Sciences, University of Aberdeen. She is supervised by Professor Louise Locock, Dr Karen Keenan (both University of Aberdeen) and Dr Fadhila Mazanderani (University of Edinburgh). The Healthtalk study is funded by the MND Association (PI: Prof. Louise Locock; grant reference number: Locock/Sept19/941-794).


We’d like to thank Jade for sharing her research study in this blog post. For more information, check out these resources:

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.

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