Dear diary… Using diaries to understand the challenges of MND

Dear diary… Using diaries to understand the challenges of MND

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Guest researcher blog post written by Nicola Glennie.

When you throw a pebble into a pond, the ripples caused by the initial splash can reach far and wide. A diagnosis of Motor Neurone Disease can be like this with the effects of the initial diagnosis reaching beyond the physical symptoms of the illness to other aspects of people’s lives and leading to significant changes within family life, home life and work life.

Second year PhD Student Nicola Glennie

My name is Nicola Glennie and I am a second year PhD student at the University of Stirling in Scotland. I am leading a research study entitled the MND diary project  which aims to investigate the wide-ranging effects and challenges that a diagnosis of MND can bring to people’s lives.

How we cope with challenges can be a difficult thing to talk about or describe. Often, we just get on with our daily life as best we can and don’t think about how we are doing this. In addition, because of the physical effects of MND, it may be that the things people used to do to cope in stressful situations may no longer be available to them and they have had to adapt.

The project aims to listen to people’s stories about the specific challenges MND has brought to their daily lives and how they are dealing with them. I am asking participants what they found helpful in these situations and what didn’t help, or even potentially made things worse.

How people cope with MND in their lives can be very individual – what works for one person will not work for everyone. By bringing together people’s stories about how an MND diagnosis has affected their lives and how they dealt with these challenges, the MND diary project aims to build up a picture of the different ways that people cope with MND in their daily lives. Doing this will enable us to develop ideas of ways to enhance the wellbeing of people living with MND and to see where health and social care provision could perhaps improve in the future to better meet the needs of people living with MND.

Why is this type of research important?

Not all research into MND is focused on finding a treatment or cure for MND and this type of research is just as important in helping us to understand more about the disease as biological research. Taking part in qualitative research, such as this study, widens the opportunities for people to explain, in their own words, what the experience of living with MND is like for them. Expressing what their needs are and sharing their ideas of where improvements are required to meet these needs.

Researchers can then take these findings and share them in peer-reviewed papers. Decisions about which health and social care services to provide or recommend are often based upon the research evidence base available and that is usually peer-reviewed published papers. Taking part in research means the voices of people living with MND are present in these papers and can be heard when organisations are looking for the research evidence to develop their recommendations from.

What does the MND diary project involve?

The MND dairy project involves talking to people living with MND in the UK about the challenges they are facing since diagnosis. The main part of the project involves two interviews which are three months apart, but participants are encouraged to keep a diary between these interviews too. As it is known that MND can increase levels of fatigue and people have lots of things going on in their lives, the research has been designed to fit around people’s daily lives. For example, interviews could be by video/phone call, by email correspondence, or even by good old-fashioned post.

One of the aims of the project is to look into the stories about the challenges people with MND face in their lives and how they reacted. So, the entries in the diary are designed to be when the person feels like they have something to say and could be anything important to that person. This is where creativity can really come into play! The entries can be through poems, drawings, photos, writing or even by audio.

As the project progresses, friends/family/carers of people living with MND and health professionals who care for people living with MND will be invited to share their stories in group sessions. Understanding the impact of an MND diagnosis on those around the person living with MND is also important and these stories will help shape ideas to improving wellbeing for all involved.

Sharing the results with the MND Community

At the end of the MND diary project, as well as putting papers forward for publication, I will be inviting people who have taken part and others from interested charities, NHS Trusts and related organisations to a presentation of the findings – and discuss how they can inform, enable and shape progress in improving the care and wellbeing of people living with MND, their families and carers.

If you would like to know more about the project, or would be interested in taking part, please get in touch via:

Alternatively, please see the MND Association take part in research page:

Thank you to Nicola for writing this blog.

Nicola’s PhD studentship is funded by the ESRC with the University of Stirling. She is supervised by Professor Emma France, University of Stirling and Professor Fiona Harris, University of West of Scotland.

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.