The Stoma Support Study: Supporting the identification and management of distress in young people with an IBD stoma

Many young people (aged 16-29) with inflammatory bowel disease− Ulcerative Colitis or Crohn’s disease− undergo surgery to remove all, or part of, their large bowel. Individuals with Crohn’s disease may also have part of their small bowel removed. This surgery can result in the person having a stoma─ an opening in the abdomen through which faeces (poo) are collected in a bag attached to the skin.

Adapting to life with a stoma can cause distress for young people, as a result of concerns about body image, sexual difficulties, worries about socialising, and lowered self-esteem. Whilst many issues related to living with a stoma are managed by consultants and specialist stoma nurses, distress is often managed in primary care by General Practitioners (GPs), because people with a stoma have reported preferring to discuss these issues with their GP. However, our research found that stoma-related distress may not always be recognised or well managed by healthcare professionals. Providing support at an early stage to identify, manage and reduce distress in young people with a stoma is crucial, as this can prevent distress from worsening and leading to depression.

This research aims to develop the content and format of an online resource to support young people to manage distress following stoma surgery, through improving their confidence in dealing with distress, and equipping them with coping skills and strategies. We will also develop an online information and training package for healthcare professionals to help them to identify and manage stoma-related distress. We will review existing studies that have developed resources for providing psychological support in other health conditions. We will then work with young people and healthcare professionals in a series of workshops to collaboratively decide what the support resource and information and training package should include (content) and how it should look and be accessed (format) by young people and healthcare professionals. This will result in a detailed specification of the planned online resource and training package.

We will then apply for further funding so that after the study finishes we can work with web designers to build the online support resource and information and training package, which will be made freely available to young people with a stoma and healthcare professionals in the future.

Amount awarded: £59,779