RecruitingObservational

Exploring communication between people living with Motor Neurone Disease and their close persons with healthcare professionals

This study aims to understand how people living with Motor Neurone Disease (MND) and their close family or friends communicate with healthcare professionals. MND can make speaking difficult, especially as the illness progresses, which can affect care planning. Researchers want to identify what helps and hinders these conversations to improve how care is delivered. The goal is to develop helpful tools for healthcare professionals. Participants will have up to three interviews over 12 months, and some clinical appointments will be observed. There are no major risks, but support will be available for emotional topics. The study is run by the University of Birmingham and funded by the National Institute for Health and Care Research.

At a glance

Status

Recruiting

Sponsor

University of Birmingham

Enrolment target

Start

01 Mar 2026

Estimated completion

30 Mar 2027

Motorneurone Disease

What is this study about?

Motor Neurone Disease (MND) is a serious condition that affects how your brain and nerves work. This can lead to problems with movement, speaking, and eventually breathing. As MND progresses, it often becomes harder for people to communicate their thoughts and needs, especially when making important decisions about their care.

This research project wants to understand how people with MND, their close family members or friends, and the doctors and nurses looking after them talk to each other. We're interested in finding out what helps these conversations go well and what makes them more difficult. By understanding this better, the study hopes to find ways to improve communication for everyone involved in MND care, making sure people's wishes are heard and understood.

The ultimate goal of this study is to create a useful toolkit. This toolkit will give healthcare professionals practical advice and resources to communicate more effectively with people living with MND. This could lead to better care, more informed decisions, and a better experience for patients and their families.

Key takeaways

Aims to improve communication between people with MND and healthcare staff.
Participation involves sharing experiences in interviews.
Could help future MND patients and their families.
No direct health benefits, but your input is valuable.
Emotional support will be available if needed.
Study runs until August 2027 and is funded by NIHR.

Who may be eligible?

The study is looking for a few different groups of people to take part. This includes adults aged 18 or over who have been diagnosed with Motor Neurone Disease.

They also want to hear from close family members or friends who support someone with MND. And finally, healthcare professionals who work with MND patients are also invited to share their experiences.

To be eligible, you need to be able to understand what the study involves and agree to take part. You also need to be well enough to participate in an interview. People who are under 18, too unwell, or have expressed a wish not to be involved in research, unfortunately, cannot take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or over?
Can you understand and agree to take part in the study?
Are you able to take part in an interview (speaking or writing)?
Have you been diagnosed with Motor Neurone Disease, or are you a close family member/friend of someone with MND?
Are you a healthcare professional supporting MND services?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would be asked to participate in up to three interviews over a period of 12 months. These interviews would happen roughly every 4 to 6 months. These conversations will give you a chance to share your experiences of communicating with healthcare professionals. Researchers may also sit in and observe about 10 real-life clinical appointments to see how conversations happen in practice. This study will run from September 2025 to August 2027.

Potential risks and benefits

Taking part in this study won't directly improve your health, but your experiences could help improve communication for other people living with MND in the future. There are no major physical risks involved. However, talking about your illness and difficult subjects like end-of-life care can sometimes bring up strong emotions. Understanding this, the study team will ensure support is available if you need it. Remember, your participation is voluntary, and you are free to withdraw from the study at any time without explanation.

Locations (5)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

St Giles Hospice
Unverified
Whittington, England
Severn Hospice
Unverified
Shrewsbury, England
LOROS Hospice
Unverified
Leicester, England
University Hospitals Birmingham NHS Foundation Trust
Unverified
Birmingham, England
Nottingham University Hospitals NHS Trust - Queen's Medical Centre Campus
Unverified
Nottingham, England

Common questions

What is the main aim of this study?

The study wants to understand how people with MND, their families, and healthcare staff communicate, to improve care in the future.

Who can take part?

Adults with MND, their close family or friends, and healthcare professionals involved in their care.

What will I have to do if I join?

You might be asked to take part in up to three interviews over a year to share your communication experiences.

Are there any risks to participating?

There are no major risks, but talking about serious illness can sometimes be emotional. Support will be available if needed.

Will my information be kept private?

Yes, all your responses and personal information will be handled confidentially by the research team.

How to find out more

Cara Bailey

C.bailey.2@bham.ac.uk +44 7736927949 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.