Experiences of emotional distress in people with MND

Understanding the emotional experiences of people with MND and the effectiveness of the current tools used to measure emotional distress

This study aims to better understand the emotional experiences of people with MND, first-hand from people with MND and their carers. The overall aim is to improve current understanding of the different aspects of emotional distress which people with MND can experience, so that emotional support can be improved and more targeted to these key areas in the future. The study also wants to understand whether people with MND and their carers believe the current tools used to measure emotional distress in MND are effective and relevant.

What does taking part involve?

If people with MND or carers decide to take part in the study, they will be invited to participate in two confidential interviews about their experiences of emotional distress, including their
support systems and specific times of difficulty. Participants will be asked for  their opinions on the current measures of emotional distress in MND by asking them to give feedback on some currently used questionnaires.

The interviews can be held face-to-face at a location chosen by the participant (if local to Sheffield), by video or phone call, or by writing (e.g. email), depending on their preference.

It is estimated that the interviews will last 30-60 minutes each.
With permission, the interviews will be audio-recorded if held face-to-face or via telephone or video-recorded if held online. Cameras can be switched off on video calls if participants wish to do so.

Participants can choose not to answer any question that they do not want to. The interviews will go at the participant’s pace and interviews can be stopped or paused at any point.

Any travel expenses will be reimbursed and participants will receive a £10 voucher per interview for their time.


Study location


Who can take part?

People with MND 
Current carers of a person with MND 
Bereaved carers of a person with MND. Carers who have cared for someone with MND within the past 12 months.

All participants must be over 18 years old and be able to consent to taking part in the study themselves.

How can I take part?

For further information or to take part, please contact Niamh Appleby - nappleby1@sheffield.ac.uk.



For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262