A new study will explore coping and resilience among people living with motor neurone disease (MND), with the aim of helping to improve the resources and support available to them.
The MND Diary Project will recruit people living with the life-shortening illness – which affects one in 300 people in the UK – in a bid to understand and learn from their experiences and the challenges presented by their diagnosis.
By collating these shared experiences, the project – from the University of Stirling – aims to enhance future care provision for those with the disease.
“A diagnosis of motor neurone disease can affect people’s lives in many ways,” says Nicola Glennie, a PhD researcher with the nursing, midwifery and allied health professions research unit, in Stirling’s Faculty of Health Sciences and Sport.
“Our project will explore people’s experiences of coping, or not coping, with all the effects that a diagnosis of MND has within their lives, both at home and at work.
“We’re investigating more than just the physical symptoms of the disease and want to understand how people deal with these challenges, what helps and what does not help. We are exploring how this may change over a period of three months.
“How people cope with challenges can be a very individual thing and what works for one person may not work for someone else.
“By listening to people’s individual experiences, we’re hoping to build up a picture of the similarities and differences in the ways people cope with MND in their lives.
“Our aim is to use these results to help inform the future healthcare for people living with MND.”
MND causes messages from the motor neurones to gradually stop reaching the muscles – leading them to weaken, stiffen and waste. The illness can affect how people walk, talk, eat, drink and breathe, and some experience changes to their thinking and behaviour.
However, the disease can impact everyone differently – not all symptoms will affect everyone, or in the same order, or at the same speed.
Much-loved sporting legends Rob Burrow, Stephen Darby and Doddie Weir have increased awareness around MND in recent years, having been diagnosed with the illness themselves.
Recruitment for the new study is being supported by several charities, and anyone who is living with MND, based in the UK and aged over 18 who would like to take part in the project can get in touch with the research team.
Participants would be interviewed twice – three months apart – and are encouraged to keep diaries between the interviews, reflecting on events or challenges faced. The diaries can be kept in any format – written, filmed, or photographed – and creativity is welcome.
When the project concludes, participants will have the opportunity to take part in an event – alongside others living with MND, healthcare professionals, carers, and other stakeholders – where the collated stories are presented and discussed, with a focus on future healthcare.
Ms Glennie’s PhD is funded through an Economic and Social Research Council (ESRC) studentship award from the Scottish Graduate School of Social Sciences. The ESRC is part of UK Research and Innovation.
