Living with short bowel syndrome: The patient journey & family impact
Research type
Research Study
Full title
Living with short bowel syndrome: qualitative interviews with patients and family members affected by short bowel syndrome, to understand the patient journey and the impact on the family.
IRAS ID
183396
Contact name
Simon Lal
Contact email
Sponsor organisation
Salford Royal NHS Foundation Trust
Duration of Study in the UK
0 years, 3 months, 10 days
Research summary
Short bowel syndrome (SBS) is a rare condition. It is caused by the small bowel losing the ability to take in as much nutrients as a healthy working bowel. This drop in the ability to take in nutrients can be caused by surgery, a genetic fault, or illness. This means that people who have SBS are at great risk of not getting enough food and water. Left untreated this could lead to death. SBS can be very different in each person but usual signs are an upset stomach, diarrhoea and stomach pain.
Patients with SBS have difficulty getting nutrients and water through eating food. Often patients need to have a treatment called parenteral nutrition (PN), which is feeding a person through a vein. The normal treatment is home PN, which involves the patient using PN overnight for a number of days a week. Even though PN is life-saving it is linked with risks such as liver failure and infection, as well as upsetting the individual’s everyday life. The patients also have to cope with problems like feeling low and being tired. Also, the burden on caregivers is large. It is clear that there is a need for treatment that improves food uptake in the remaining bowel, at the same time as lowering the need for PN.
An interview study will be run with patients who have SBS and their families. An interview study will help in the understanding of what it is like to live with PN for the patient and their family. Understanding the condition and its impacts will help in the development of future treatments, which will be better suited to meet patients’ needs. This research will aim to improve service provision and consider the impact of volume and frequency of PN on patients’ daily lives.REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
15/NW/0576
Date of REC Opinion
27 Jul 2015
REC opinion
Favourable Opinion