The MND diary project

Investigating coping and resilience in families and carers of people living with MND

A diagnosis of motor neurone disease can affect not only those diagnosed but also their families and carers lives in many ways. The aim of the MND diary project is to explore people’s experiences of coping or not coping with all the effects that a diagnosis of MND has within their lives.

The first part of the project asked people living with MND to share their experiences by keeping diaries for 3 months. To explore the topic from a different perspective we would like to invite family/carers of people living with the MND to share their stories. Researchers would like to hear what people found challenging, how they dealt with these challenges and what things or people either helped or did not help when dealing with the challenges.

How people cope with challenges can be a very individual thing even within the same family people may cope with things in different ways and what works for one person may not work for someone else. By listening to people’s individual experiences, the study team are hoping to build up a picture of the similarities and differences in the ways people cope with MND in their lives. The aim is to use these results to help inform the future healthcare for people living with MND and their family and carers.

What does taking part involve?

Participants will be able to take part from home. Taking part will involve attending an online group discussion with around 6 other family/carers of people living with MND and the researcher. In the session we would discuss the groups experiences of coping with challenges related to MND. The group session should last no longer than 90 minutes and will take place at a time that is mutually convenient to participants.

If you are interested in sharing your experiences but are unsure of doing this in a group setting, please do get in touch as we can offer a one-to-one online interview if this is something you would prefer.

The person you care for does not have to have taken part in the diary part of the research or be involved in the group session or interview.

At the end of the research, you will be invited, if you wish, to take part in a workshop with healthcare professionals, carers, people living with MND and other stakeholders where we will present our findings and discuss how these results can be used to make a difference to the future healthcare of people living with MND and make suggestions for future research. You are under no obligation to take part in this workshop.

Study location

UK-wide

Who can take part?

• Family/carers of people living with MND

Over 18 years old

• Living in the United Kingdom

How can I take part?

To express an interest in taking part or if you would like to find out more contact Nicola Glennie, Postgraduate researcher at the University of Stirling:

Email: n.e.glennie@stir.ac.uk
Telephone: 01786 466385
Twitter: @nicola_glennie

You can also find out more information on the project blog.

Funding

Economic and Social Research Council