The MND diary project Version 1.0
Research type
Research Study
Full title
The MND diary project- Investigating coping, resilience and health literacy of people living with Motor Neurone Disease (MND)- a longitudinal qualitative study
IRAS ID
293142
Contact name
Nicola Glennie
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
2 years, 11 months, 29 days
Research summary
Motor Neurone Disease (MND) is a life limiting illness with no known cause or cure. People with MND gradually lose ability to move, speak, eat and breathe all the essential things that enable us to be ourselves and take part in society. Research shows that it is not only the physical symptoms of this illness, but the effects upon family life, working life and social life that greatly affect the quality of life of people with MND.
At present health care focuses upon the physical symptoms of this illness, but although we know the psychological and social effects are just as devastating, there is very little research into how to help people with MND deal with this. This qualitative longitudinal project aims to better understand how people cope with the emotional effects of MND and the actions they take to find satisfaction in their daily lives.
People living with MND after an initial interview will be asked to keep diaries for a period of 3 months followed by a post diary interview. To enable all people with MND to take part the method of interviews and diary keeping will be chosen by the participant and may be audio, written or visual depending on their choice. Due to current covid restrictions interviews are not expected to be in person but either by telephone or online. The focus of the diaries will be upon coping strategies, resilience and interactions with healthcare. To enable different perspectives to be heard two focus groups will also take place one with carers and one with healthcare professionals involved in the care of people living with MND asking about similar issues covered in the diaries.
Understanding these issues will allow us to provide better healthcare for people with MND that recognises all needs not just physical needs.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
22/SC/0112
Date of REC Opinion
19 Apr 2022
REC opinion
Further Information Favourable Opinion