Investigating the different aspects of emotional distress which people with MND may experience.
This study by the University of Sheffield aims to understand better the emotional experiences of people with MND, first-hand from people with MND and their careers. The overall aim of the study is to improve the understanding of the different aspects of emotional distress which people with MND can experience, so that better and more targeted emotional support can be provided in the future. Additionally, this study wants to understand whether patients with MND and their carers believe the current tools of measuring emotional distress in MND are effective and relevant for people with MND.
Previous interviews of people with MND and their carers provided really useful results. These were presented as a poster at the MND Association symposium in 2023. The researchers are looking to do some more interviews to explore the findings they thought were the most interesting.
Taking Part
What does taking part involve?
If people with MND or carers decide to take part in the study, the researchers will have a short discussion to check they are eligible and how they would best like to take part.
They will be invited to participate in two confidential interviews about their experiences of emotional distress with MND, including their support systems, specific times of difficulty etc. The researchers will ask their opinions on the current measures of emotional distress in MND by asking them to give feedback on some currently used questionnaires. These will be sent in advance.
The interviews can be held face-to-face at an agreed location (if local to Sheffield), by video or phone call, or by writing (e.g. email), depending on their preference. Travel expenses will be reimbursed. It is estimated that the interviews will last 30-60 minutes each.
With their permission, the interviews will be audio-recorded if held face-to-face or via telephone or video-recorded if held online. The researcher will ask questions about their emotional experiences with MND and participants can choose not to answer any question that they do not want to. The interviews will go at the participant’s pace and they can stop or pause the interview at any point. A carer can be present if they prefer to support them during the interview. Participants are welcome to use communication devices or eye-gaze if they wish.
Who can take part?
• Participants must be able to understand English
• Aged 18+, with access to the internet
• Able to consent to taking part in the study
• Must be able to take part in an interview by telephone, video or email
Open to people who have either been diagnosed with MND or currently care for/have cared for a friend/family member with MND within the past 12 months.
How can I take part?
Participants can contact Antonia Pavlou-Rodriguez by emailing [email protected]
or telephoning Dr Esther Hobson’s secretary Zoe Hamilton 0114 2712306
The study is being overseen by Dr Esther Hobson, Senior Clinical Lecturer, University of Sheffield and the Sheffield MND Care and Research Centre.
Study Locations
UK-wide
Funding
N/A