Living with IBD: the experiences of adults from ethnic minority groups

What the research is looking at?

In recent years, increasing numbers of South Asian people are being diagnosed with Inflammatory Bowel Disease (IBD).  However, research into the experience of South Asian people with IBD in the UK is extremely limited and rather out of date.  A much more comprehensive understanding of the experiences of these people is needed.  This will then enable the NHS and charities such as Crohn's and Colitis UK to better provide for their needs. 

The researchers want to carry out in-depth interviews with 50 to 60 South Asian people with IBD, in order to gain an insight into their experiences of living with IBD, and the support that they need.  The group of people interviewed will include men and women from Indian, Pakistani and Bangladeshi origin, and will include Muslim, Hindu and Sikh patients.  

The interviews will explore the impact of IBD on everyday life, perceptions and understanding of the condition, diet, lifestyle, treatments and experience of health services. 

Conclusions: 

The study revealed that although the experience of having IBD is similar for everyone, people from South Asian communities do face specific issues. Participants were more likely to be trying complimentary or alternative medicines, and encounter problems around travel due to being more likely to have family living overseas.   

Most participants revealed they found it difficult to talk to other South Asian relatives about having IBD, as there is a lack of knowledge about the condition in the community. In fact there is no word for Crohn’s in some South Asian languages which complicates things when trying to explain the condition. This often made participants feel silenced and misunderstood. For example most felt that South Asian food made their IBD symptoms worse and wished to avoid it, but this often led to pressure from relatives to consume these foods at religious or social occasions. People often tried to conceal their condition as they were embarrassed by their symptoms. 

Ill health can be particularly stigmatised in some South Asian communities, due to the perception that it impacts negatively on ‘marriageability’ – women in particular worried that they would be judged harshly for being too ill to take on the duties expected of a wife and mother. 

The team published their findings in an article in the Journal of Crohn's and Colitis in 2020. 

What do researchers think this could mean for people with IBD? 

The study highlights how exploring a patient’s cultural context can improve their experience of IBD. The researchers hope the findings will encourage healthcare professionals to deliver more holistic care, with culturally appropriate advice relevant to the patient’s own life. 

Who's leading the research: Dr Suzanne Mukherjee, University of York 
Our funding: £79,973 over 18 months 
Official title of the application: “Living with Inflammatory Bowel Disease: The experiences of Adults of South Asian Origin.”
Tags: Ethnic groups