Pressure ulcer prevention at home

Understanding ways to help prevent pressure ulcers at home and creating resources to help manage pressure ulcer risk. 

Pressure ulcers (sometimes called bedsores) are patches of damaged skin and tissue. Pressure ulcers are a serious problem. They can lead to pain, long hospital stays, surgery and even death. People living with MND may be at risk of pressure ulcers, if they are unable to move around and change position easily.

Most pressure ulcers can be prevented, if people have the right support. In hospitals, there are lots of things in place to help prevent pressure ulcers. However, there is not enough support for people who live at home. This study will explore how to make pressure ulcer prevention part of wider self-care and look at how carers can support pressure ulcer prevention.

What does taking part involve?

The study is very flexible and there are different ways that people can get involved.

People with MND and their carers (e.g. family members/friends) can be interviewed (face to face or video call) about their experience of self-care or supporting someone else. For example, how they look after their skin day to day and what resources could make that easier. Participants can also provide some information via a smartphone app where questions will be sent through a secure app called Field Notes.

Personal assistants (health and social care professionals who are employed to support people with long term, neurological
conditions living at home) can also take part in interviews and provide information via a smartphone app. They are also invited to join a research group with other personal assistants. The group will meet regularly over the next 2 years, supported by staff from the University of Leeds. Group members can take part in a range of activities, based on their individual interests and skills, such as sharing their experiences of self-care or supporting others and making decisions about how projects are run.

All participants can join an email mailing list to get updates about the project and other relevant research.

Participants will be will be offered a £20 shopping voucher as a thank you for each activity they take part in. Personal Assistants taking part in the research group will be offered a small thank you payment for giving their time (the rate of payment will depend on the types of research activity they decide to take part in, ranging from £30 to £75 per activity).

We will also cover reasonable, out of pocket expenses (e.g. travel).

Study location

England-wide (remote)

Who can take part?

People with MND who live at home
Carers of a person with MND who lives at home
Personal Assistants who support people with MND living at home

All participants must be aged 18+.

How can I take part?

For further information, please contact the study team on- or 0113 343 0282.



National Institute for Health and Care Research (NIHR)


For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262