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Optimising Care Pathways for families living with MND
Optimising Care Pathways for families living with MND
UK Chief Investigator
UK Chief Investigator
Linda Birt
Research summary
Research summary
In the United Kingdom about 5,000 people have Motor Neuron Disease (MND). The illness affects the brain and nerves meaning people may be unable to move their limbs and have difficulty speaking, eating, and breathing. Relatives or close friends (carers) play an important part in providing care. Many carers provide over 75 hours care a week. Carers often have expert knowledge of their relative’s needs and their specialised equipment. Often carers say they do not always feel supported in their role, and that sometimes there is a lack of joined-up communication across health and social care. The MND Association provide essential information to help patients and families. We are working with the MND Association in the research. We have a public advisory group of people who are current or former family carers of a person living with MND. They help us ensure that the research is safe and acceptable for families who can be physically and emotionally exhausted. This research aims to find out if different ways of providing MND care leads to different outcomes for family carers and the person living with MND. There are two ways we will do this:
1. People with MND, carers and health and social care staff can complete a short online survey to tell us about their experiences;
2. Up to 25 patients and their carer from 5 different NHS hospital or specialised MND care centres will take part in a one-off interview. Up to 15 of these families will be part of a 12-month study. Across the year the researcher will observe communication between the family carer and healthcare staff on at least two occasions, and undertake a follow-up interview. We will also do one-off interviews with up to 30 health and social care staff who support families with MND.
Current status
Current status
Open to recruitment
Key dates
Key dates
Recruitment opening date: 29 January 2026
Planned recruitment end date: 31st August 2026
Recruitment groups
Recruitment groups
Patients with MND
Family carers
Health, social care staff and third sector staff
Recruitment target
Recruitment target
55 participants
Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)
Locations
Locations
To be confirmed
Contact details
Contact details
Email Linda Birt linda.birt@leicester.ac.uk or Kay Phelps kp14@le.ac.uk
Inclusion / exclusion criteria
Inclusion / exclusion criteria
Inclusion criteria
ONLINE SURVEY
The study is only open to people who live in the UK.
Online survey - inclusion criteria for people living with MND:
18 years of age or over
Have a diagnosis of MND
Able and willing to use an online survey tool or able to complete it verbally over the phone.
Able to give informed consent.
Online survey - inclusion criteria for family carers:
18 years of age or over
Provide unpaid support to a person with MND
Able and willing to use an online survey tool, or able to complete it verbally over the phone.
Able to give informed consent
Online survey - inclusion criteria for health, social care staff and third sector staff:
• 18 years of age or over
• Provide care and support to families living with MND
• Have contact with family carers
• Able and willing to use an online survey tool.
• Able to give informed consent.
INTERVIEWS
This aspect of the study is only open to people who live and/or work in England or Wales.
Participants will be recruited to the Phase one interview study, from this group a sub-sample will be recruited to the Phase 2 Focused Ethnography.
Interviews - inclusion criteria for people living with MND:
18 years of age or over
Have a diagnosis of MND
Able and willing to agree to a family or friend discussing their experience of providing care or support to the person
Will be receiving care and support during the observation. (if wishes to be considered for Phase 2 Focused Observation)
Understands and is able to communicate in English (or via an interpreter)
Able to give informed consent.
Interviews - inclusion criteria for family carers:
18 years of age or over
Provides unpaid support to a person with MND
Be willing and able to reflect on their experiences providing care and supporting a relative or close friend with MND
Will manage care and support for the person living with MND during the observation
Able and willing to undertake an interview either in person, by telephone or through video conferencing
Understands and is able to communicate in English (or via an interpreter)
Able to give informed consent.
Interviews - inclusion criteria for health, social care and third sector staff:
18 years of age or over
Provide care and support to families living with MND
Able and willing to undertake an interview either in person, by telephone or through video conferencing
Willing to manage care and support to families living with MND during the observation
Understands and is able to communicate in English
Able to give informed consent
Exclusion criteria
If all inclusion criteria are met there are no specific exclusion criteria.
Funder
Funder
NIHR
Sponsor
Sponsor
University of Leicester
Study design
Study design
Observational
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