Stoma Support Study II: Co-production and user-testing of a digital intervention to support the prevention and self-management of distress experienced by young people with a stoma due to inflammatory bowel disease (IBD)

Many young people, aged 16-35, who have inflammatory bowel disease (IBD) have surgery to remove all, or part of, their large bowel. This can result in them having a stoma. This is an opening in the stomach for faeces (poo) to be collected in a
bag attached to the skin. Living with a stoma can cause emotional distress for young people, due to concerns about body image, sexual difficulties, worries about socialising and low self-esteem.

Whilst many stoma-related issues are managed by consultants and specialist stoma nurses, distress is often managed in primary care by General Practitioners (GPs). This is because young people with a stoma have said they prefer to discuss

these issues with their GP. However, our previous research found that stoma-related distress is not always managed well by healthcare professionals (HCPs). Providing support at an early stage is crucial, as this can prevent young people’s distress
from getting worse and leading to depression.

To address this problem, we completed a study in which we worked with young people with a stoma, HCPs and national IBD/stoma charities. Together we decided the content and format of a website (“online resource”) to support young people
to cope with distress related to their stoma.

The planned study will build on this previous research. We will work with 12 young people with a stoma, HCPs, IBD/stoma charities, and web-developers, to produce the online resource. This will involve writing/recording content and building the
website. We will work closely with young people from Black, African, South Asian and Caribbean backgrounds, as people from these groups can face additional challenges related to their culture. We will aim to make sure the online resource meets their
needs.

Once our online resource is produced, we will recruit 20 young people with IBD and a stoma to try out (“user-test”) the resource and be interviewed. They will provide feedback, allowing us to make changes. We will then interview the same
group of young people again, to allow for further changes.

Our Public Co-applicant and Patient and Public Involvement and Engagement (PPIE) group of six young people with a stoma will advise us about developing the resource, deciding what the findings mean, and where to share them.

At the end of the study, we will have the finalised online resource. We will then apply for further funding to test out whether using the online resource can help young people with a stoma to feel less distressed. If the resource benefits young people,
in the future it will be freely available to use, to prevent young people with a stoma from experiencing depression. It may also lead to fewer primary care consultations for stoma-related mental health problems in the future.