The Stoma Support Study was recently carried out at Keele University, funded by an SPCR 1-IV grant. The study, led by Dr Benjamin Saunders, built on previous qualitative research in which the Keele team found that young people, aged 16-35, with inflammatory bowel disease (IBD) and who have stoma surgery, commonly experience emotional distress that is often not identified and/or not well-managed in clinical settings.
In the Stoma Support Study, the Keele team worked with young people with IBD and a stoma, and a multidisciplinary group of healthcare professionals− including GPs, specialist stoma care and IBD nurses, gastroenterologists and clinical psychologists− to co-design the content and format of a digital intervention to support the management of stoma-related distress in this population. The intervention comprises two components: a) a brief training package for healthcare professionals to enhance identification and management of stoma-related distress; and b) a resource to support young people to self-manage and reduce distress.
The study was carried out across three phases – a rapid systematic review of interventions that aim to reduce psychological distress in young people with long-term conditions; a consensus groups study with 38 young people and professionals to agree intervention content; and a series of co-production workshops with 18 young people and professionals to design a specification for the intervention.
Throughout the Stoma Support Study, researchers worked closely with a PPIE group of nine young people with IBD and a stoma, who advised on all aspects of the study. Three PPIE members, Megan, Sahara and Lucy, worked with the research team to develop the following video, in which they discuss their experiences of stoma surgery and of taking part in the study.
Click on the image below to watch the video.
Funding is being sought for the next phase of this research, to co-develop, user-test and evaluate the intervention, with the goal of improving the identification and management of stoma-related distress, and reducing the experience distress in young people with IBD and a stoma.
Links to published papers:
- Access to Psychological Support for Young People Following Stoma Surgery: Exploring Patients’ and Clinicians’ Perspectives
- Self-directed self-management interventions to prevent or address distress in young people with long-term physical conditions: A rapid review
- Healthcare professionals’ priorities for training to identify and manage distress experienced by young people with a stoma due to inflammatory bowel disease: a consensus study using online nominal group technique