Inflammatory Bowel Disease and Young People from Black and Minority Ethnic Communities in the UK
Introduction: The research in this report was commissioned by Crohn’s and Colitis UK with the aim of ensuring that, as a support organisation, its policies incorporate evidence-based findings to develop and increase social inclusivity. In this instance, the focus was on young people with Inflammatory Bowel Disease (IBD) from Black and Minority Ethnic (BME) groups. Increased prevalence of IBD among young people from Black and South Asian backgrounds determined the target ethnic population for research and the age range of 16 to 24 was selected as around 20-25% of patients are diagnosed in adolescence. Young people face immense developmental changes during this period that affect them socially, psychologically, physically and emotionally. Learning to cope with IBD has to accompany, interact with, and at times, interfere with typical adolescent development. This research investigated whether, or to what extent, young IBD patients from BME backgrounds experience difficulties, arising from the interaction of their ethnicity and their condition, which exceed those of their non-BME peers with IBD. Research: A literature review identified issues specific to young people with IBD, such as social isolation, delayed independence, restricted living space. However, it also revealed a paucity of research into the non-medical interaction of ethnicity and IBD generally, and an apparent absence of data for young people with IBD from BME backgrounds specifically. The review was followed by qualitative research which comprised interviews with 20 young people (18 British Asian and two British Black) diagnosed with either Crohn’s Disease or Ulcerative Colitis. All participants were recruited through consultant gastroenterologists working in London and South-West England. Key findings: A thematic analysis of the experiences of these young people from BME backgrounds identified many commonalities with other adolescents with IBD. However, ethnicity and cultural identity posed additional challenges for our cohort and two key issues emerged: •Nearly half our sample had parents who had limited proficiency in English, and a paucity in the provision of culturally-appropriate information seriously impacted on their parents’ understanding of IBD. Crucially, this diminished the ability of some parents to provide valuable support and advocacy. Furthermore, it increased stress for several of the young people. •At least two-thirds of the sample experienced difficulties in tolerating the spicy nature of food which is typical of traditional Asian and Black cuisines. This impacted both on everyday life and on young people’s ability to be part of their cultural communities which value the social importance of sharing food. Moreover, the experiences of the young people in our study were compounded by culturally-specific societal norms, such as the need for respect for elders, and by a lack of familiarity with IBD, particularly among the Asian community. For some of the findings it was hard to disentangle how far negative experiences were a result of discrimination, being young, having a complex long-term condition, or a combination of any of these factors. While some schools displayed understanding and adopted supportive practices, the response from other schools to students with IBD in this study was found to be problematic in terms of the in-school management of their condition and their continued education. •Young people’s cumulative narratives indicated that a significant number experienced delays in diagnosis or mis-diagnosis. At primary care level there appeared to be a particular issue with some GPs’ familiarity with the condition and with their skill in communicating with young people. Conclusions and recommendations: As evidenced by the findings in this report, it is crucial that ethnicity and cultural identity is taken into consideration both at diagnosis and when providing healthcare and support for young people with IBD from BME backgrounds. Recommendations arising from the research focus on addressing parental understanding, referral pathways within primary care, educational and social support, and social inclusivity. They include: •greater provision of more culturally-appropriate information and extra support where necessary; •raising awareness and better understanding of IBD within primary care, education, and among South Asian and Black communities; •helping this group of young people to cope and feel socially included within culturally-sensitive contexts. The outcomes of the research are intended for Crohn’s and Colitis UK. However, the findings also have implications for healthcare professionals both within gastroenterology and in other areas of specialism.