V3 -Experiences of grief, loss and hope in Motor Neuron Disease
Research type
Research Study
Full title
Experiences of grief, loss and hope in Motor Neuron Disease: A narrative interview study.
IRAS ID
367808
Contact name
Alys Griffiths
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Motor Neuron Disease (MND) is a serious and life-limiting neurological condition that affects movement, speech and breathing. While the physical effects of MND are well recognised, much less is known about how people living with MND experience emotional issues such as grief, loss and hope. Where psychological responses have been examined, research has predominantly focused on family members and carers, rather than people living with MND themselves.
This study aims to better understand how people living with MND experience and make sense of grief, loss and hope following their diagnosis; and what kinds of psychological support they feel would be helpful. Gaining this understanding is important because psychological wellbeing has a strong influence on quality of life; yet access to psychological support for people with MND remains extremely limited.
The study will use a qualitative research design. Adults aged 18 and over, with a formal diagnosis of MND, will be invited to take part. Around 12–15 participants will be recruited through NHS MND services and the MND Association.
Participants will take part in a single in-depth narrative interview. Narrative interviews encourage participants to share their experiences in an open-ended, story-like format. Interviews may take place online, in participants’ homes, or by email, depending on individual communication needs and preferences. Adjustments such as breaks, receiving interview questions in advance or completing the interview over more than one session will be offered, to offer flexibility in line with the impact of MND on peoples' lives.
The findings will help improve understanding of the emotional impact of MND and may inform future psychological support services for people living with the condition. The study is funded and sponsored by the University of Sheffield as part of a doctoral research programme.
REC name
London - Surrey Research Ethics Committee
REC reference
26/LO/0281
Date of REC Opinion
13 May 2026
REC opinion
Further Information Favourable Opinion