This scoping study aims to explore the feasibility of capturing the experiences of black and minority ethnic (BME) people living with Inflammatory Bowel Disease (IBD) in a single NHS Trust. There will be a special focus upon those patients who do not speak English as their first language. The data delivered will enable the team to develop a larger scale, multi-centre project. The study will have four distinct phases:
PHASE 1: Literature review looking at BME patients’ experiences of living with IBD – as well as with similar chronic bowel or related illness;
PHASE 2: Interviews with BME people with IBD;
PHASE 3: Development and piloting of a survey based on the outcomes of phases 1 & 2;
PHASE 4: A small group workshop with nurses, patients, carers and other healthcare professionals to present the findings of the earlier phases and to begin the process of consulting and co-designing a larger study.
The study is being led by Dr Paul Newton, a Research Lead in Adult Nursing and Paramedic Science at the University of Greenwich.
Why study the experiences of BME people living with Inflammatory Bowel Disease?
There is virtually no evidence on the healthcare experiences of non-English speaking BME people with IBD, or on their experiences of surgery. Of the two papers that are available, one addresses the needs of young people aged 17-24, one has not been published in the academic domain, and both have recruited English speakers.
There are likely relevant cultural, religious and personal influences within the BME community which influence BME patients’ experiences of IBD, but with no clear evidence, clinicians are blind to these needs and unlikely to be delivering culturally-sensitive care, or providing disease specific information (such as preparation for investigative procedures, or advice about medicines and surgery) in the most appropriate language for patients.
There is currently a distinct possibility that safe and compassionate care for this particular group of patients is being compromised. This research will generate unique evidence which addresses an unmet need in an ethnic population which is currently under represented and whose needs are therefore largely ignored.