Qualitative research in MND: navigating challenges for participants and researchers

Qualitative research in MND: navigating challenges for participants and researchers

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Jade and Liam are researchers at Sheffield Institute for Translational Neuroscience, University of Sheffield. Liam’s work aims to improve healthcare services through technology by involving people with MND in their development. Jade is interested in using research to better understand the issues and implications around genetic forms of MND and to support people to navigate decisions such as genetic testing. This blog is a guest blog written by Jade and Liam.

Liam and Jade from the Sheffield Institute for Translational Neuroscience, University of Sheffield.

Qualitative research aims to make sense of experiences, attitudes, meanings, and processes – questions around ‘what’, ‘why’ and ‘how’ that can’t be measured in numbers. Qualitative researchers work in many health-related areas. In MND, qualitative methods are being used to improve understanding of living with tracheostomy ventilation; to inform the development of resources to help people with MND and family members make informed choices about genetic testing; and to understand factors impacting MND psychology services and how to improve them.

Qualitative research includes a range of methods for collecting and analysing data. Interviews are often used to explore people’s experiences and perceptions, seeking to understand what is important to them in their own words. Researchers may also carry out focus groups, which involve a discussion between a group of people on a certain topic to look at their attitudes and interactions. Sometimes, qualitative researchers carry out observations in particular settings, communities, or groups (such as hospitals) to understand routines, behaviours, and how things work. These methods can be used to gain an insight into people’s needs, improve care, inform the development of interventions, and changes to policy and practice.

Whilst qualitative research is important in MND and other neurological conditions, it brings challenges for people taking part and the researchers themselves. Taking part in qualitative interviews or focus groups can involve talking for an hour or more, and sometimes travelling to research centres or having a researcher come to your home. For people with fatigue, mobility, and communication issues, this can be a barrier to taking part and mean that their views may not be heard. This may particularly be the case for individuals who use non-invasive ventilation or a speech aid. There may also be additional challenges for people who do not speak English as a first language.

However, there are ways of doing qualitative research that support participation and inclusion, and it is important that studies are designed in a way that takes this into account. Researchers may need to offer multiple options for taking part in interviews and focus groups, such as online or face-to-face participation (including by email), through providing questions in advance so people can prepare, or through planning several, shorter sessions..

Researchers may face additional difficulties in doing research with people with MND and other neurological conditions. Some researchers might have little first-hand experience of neurological conditions and may benefit from learning more about the symptoms involved and the everyday lives of individuals living with the disease. There may also be limited emotional support available to researchers and researchers may be reluctant to ask for this.

We are planning to develop a proposal to carry out a programme of work to better understand how qualitative methods are used in research with people affected by MND and other neurological conditions. We also want to explore the experiences of people with MND in taking part in qualitative research and of researchers in carrying it out, and what everyone needs to best support them to do this. We hope to develop resources to help researchers working in this field and ensure research is designed and conducted in a way that means all who want to take part can do so.

If you are interested in how qualitative methods are used, have any thoughts about how we can develop our research proposal, or would be interested in participating in the research in the future, we would love to hear from you. Please contact Liam on

We would like to thank Jade and Liam for taking the time to write this blog.

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.