What issue does this PhD project address?

Stoma formation, where part of the bowel is brought out onto the abdominal wall, is often necessary after bowel surgery. A common complication of a stoma is a parastomal hernia (PSH) – caused by a weakness in the abdominal muscle which results in a bulge next to or behind the stoma. A PSH can cause skin irritation, problems with getting a stoma bag to stick, as well as pain and other more serious complications such as bowel obstruction. These issues often have a negative impact on a patient’s quality of life.

Doctors do not yet know how best to treat PSH, some patients can wait and see how their hernia progresses, while others may need to have an operation. For those that need to have an operation there is still lots of uncertainty as surgeons do not know which is the best way to repair a parastomal hernia. Even when an operation is performed the success rates are variable but often disappointing, and some people need to have more than one operation.

What are the aims of this PhD?

This three-year project will explore why patients seek treatment for their parastomal hernias and what information they need to make informed decisions about their treatment. It will also examine how surgeons communicate with patients about the options for managing their parastomal hernia and explore the impact that shared decision making can have.

Two key outputs from the study will be a patient information aid for patients considering treatment for a parastomal hernia, and a clinician facing document to help surgeons when having these discussions with patients. This will be co-designed and developed with a group of patients who have had lived experience of a parastomal hernia to ensure that it covers everything that patients would want to know. The patient information aid will be provided free of charge to the NHS to allow patients across the UK to make informed decisions when considering parastomal hernia treatment.

This project will help us to improve our knowledge of why patients make decisions around parastomal hernia treatment, and what information needs they have. It will also provide information to surgeons and stoma care nurses to help them have better discussions with patients about the impact of parastomal hernia treatment.

The research team

The PhD student for this project, Miss Sue Blackwell, has had a non-traditional route into research, beginning as a patient advocate and trustee of Ileostomy and Internal Pouch Association. She was the first UK patient to lead a large research study into bowel disease. This £50,000 grant awarded by BRUK investigated pregnancy outcomes for people with stomas, and she is now pursuing her PhD. She is supervised by Professor Thomas Pinkney at the University of Birmingham.