About 130,000 people in the UK have a stoma. Half of these – some 65,000 people – cope with what’s called a parastomal hernia
(a bulge around the stoma). People with a parastomal hernia have told us it is unsightly, uncomfortable and often debilitating.
Putting people in control of their own care
Currently, no interventions other than surgery exist to help people live with and manage a parastomal hernia. It is essential that people with experience of parastomal hernia are involved in designing future non-invasive interventions and that is what this work aims to do.
We will:
1. Recruit 20 adults in the UK (Raigmore hospital, Inverness; St Mark’s hospital, London) who’ve had a stoma formed and who now have a parastomal hernia.
2. Conduct in-depth interviews to find out about their experiences of living with a parastomal hernia.
3. Conduct a UK-wide survey of 500 people living with a parastomal hernia.
4. Meet with our UK wide Patient Advisory Group to discuss the findings and co-design a self-management intervention.
5. Evaluate the intervention in a future study.
The intervention will improve health and wellbeing and bring real quality back to people’s daily lives, possibly enabling them to avoid surgery.
The research team
The study will be led by Professor Gill Hubbard of the University of the Highlands and Islands in Inverness, alongside a patient advisory group drawn from across the country.