Living with inflammatory bowel disease: the experiences of adults of South Asian origin (the LISA project)

SPRU research team

• Bryony Beresford
• Suzanne Mukherjee

External collaborators

• , Department of Health Sciences, University of York
• Shaji Sebastian, Hull and East Yorkshire NHS Trust

Background

In recent years increasing numbers of South Asians (SAs) living in the UK are being diagnosed with Inflammatory Bowel Disease (IBD). Research on the illness experience of SA people in the UK with IBD is extremely limited. A much broader and more comprehensive understanding of the experiences of people with IBD from the SA communities is needed if the NHS and organisations such as Crohn's and Colitis UK are to provide appropriate, or 'culturally competent', care and support.

Aims

The primary aims of the study are to describe what living with IBD is like for SA adults, including their experiences as health service users, and to understand whether ethnicity impacts on this experience and, if so, how. In addition, the study will specifically identify ways that Crohn's and Colitis UK can develop its support for this population.

Methods

In depth interviews will be used to gain an insight into participants' perceptions and experiences of living with IBD and their support needs. The interview sample will consist of 30-35 SA men and women who have been diagnosed with IBD (ulcerative colitis or Crohn's Disease). Our sample will include adults of Indian, Pakistani and Bangladeshi origin. In addition, patients with different faiths (Muslim, Hindu and Sikh) will be represented. Study participants will be recruited from five gastroenterology clinics around the UK. The research team will be assisted by a small team of trained interviewers so that participants have a choice over who interviews them (that is, male or female; some with shared experience of IBD diagnosis; SA or White British). Participants will also be able to choose between a face-to-face or telephone interview.

Policy and practice aims

The study will provide:

• Crohn's and Colitis UK with guidance on the support needs of SA adults and how to increase the engagement of this group with their organisation
• health practitioners with guidance on the provision of culturally competent care and how to develop their services in line with the needs of this population.

The LISA project team

Additional information