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For Participants

Pressure Ulcer Prevention at Home Study

We are looking for people to help with a research project about pressure ulcer prevention. You don’t need to know anything about pressure ulcers or research to take part. We are interested in what is important to individuals and how people care for themselves (or others) day-to-day.

We would like to hear from adults (over 18) who live at home with a long-term condition that limits movement. For example, Multiple Sclerosis (MS), Spina Bifida, Motor Neurone Disease (MND), Muscular Dystrophy (MD), Cerebral Palsy (CP) or Spinal Cord Injury (SCI). We would also like to speak to carers and personal assistants who support people at home.

What is a pressure ulcer?

Pressure ulcers (sometimes called bedsores or pressure sores) are patches of damaged skin and tissue. They are often caused by lying or sitting in one position (for example, when using a wheelchair). Some conditions can make it difficult for people to move around. They can also reduce people’s ability to feel and react to skin problems. Those things increase people’s risk of getting pressure ulcers. If left untreated, pressure ulcers can become a serious health problem.

What is the project about?

Most pressure ulcers can be prevented, if people have the right support. We are trying to find out what people need to help them look after their skin and maintain independence at home.

Who is doing the research?

Our research team is made up of service users, carers, personal assistants, researchers based at universities and health professionals. We strongly believe that service users, carers and personal assistants have important expertise on this topic.

What am I being asked to do?

This is a very flexible project. Below, we have outlined the different ways that people can take part. You can choose the level of involvement which is right for you.

1. Join a research group

Join a group with other service users, carers or personal assistants. Groups 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. For example:

  • Sharing your experience of self-care or supporting others.
  • Interviewing other people about their experiences.
  • Making decisions about how the project is run.

We can offer a small payment for your time and expenses (more info available on request).

2. Be interviewed about your experiences and insights

Be interviewed (face to face or video call) about your experience of self-care or supporting someone else. For example, how you look after your skin day to day and what resources could make that easier. We can offer a £20 shopping voucher as a thank you.

3. Provide information using an app on your smart phone

We will send questions through a secure smartphone app called Field Notes. To take part in this bit of the project, you need to have a smartphone. If you do not have a smartphone, you can still contribute in other ways. The questions will be about how you self-care or support others day to day. We can offer a £20 shopping voucher as a thank you.

4. Join our mailing list

Join an email mailing list to get updates about the project and other relevant research.


Your privacy is very important. We will treat what you tell us as confidential. We won’t share any information about you without your permission.

How do I find out more?

Please contact us by either email: or phone: 0113 343 0282. A researcher will get in touch to discuss the project and answer any questions. We will also send you more detailed written information. You can also complete the Agreement to Researcher Contact Form and someone from the team will get in touch with you.

This project has been approved by the University of Leeds, School of Medicine Research Ethics Committee (ref no MREC 21-069)

Thank you for considering this project!