Inflammatory bowel disease in young patients: challenges faced by black and minority ethnic communities in the UK

Abstract

There is strong evidence indicating that inflammatory bowel disease (IBD) is increasing among black and minority ethnic (BME) communities. Despite this rise in prevalence, there is a paucity of research relating to ethnicity and IBD outside the USA. Furthermore, the symptoms of IBD are reported to start during childhood or adolescence in 20-25% of people with the condition. It is therefore important that young people's experiences of diagnosis, treatment and living with IBD are fully understood to ensure effective services and information provision. The study reported on in this paper was commissioned by a UK charity (Crohn's and Colitis UK) with the aim of increasing understanding of the specific issues and service needs of young people with IBD from BME communities. Empirical research entailed in-depth semi-structured interviews with 20 young people from BME groups accessed through gastroenterology departments at three collaborating NHS hospitals in England serving ethnically diverse populations. Interviews were carried out from June to December 2010 and sought to capture young people's views with IBD. A thematic analysis of their experiences identified many commonalities with other young people with IBD, such as the problematic route to formal diagnosis and the impact of IBD on education. The young people also experienced tensions between effective self-management strategies and cultural norms and practices relating to food. Moreover, the ability of parents to provide support was hampered for some young people by the absence of culturally competent services that were responsive to the families' communication needs. The findings highlight the need for more culturally appropriate information concerning IBD, and improved responsiveness to young people with IBD within primary care and the education system, as well as culturally competent messaging relating to the specific nature of the condition among the wider South Asian and black communities.

Living with Inflammatory Bowel Disease: A review of qualitative research studies

“…Food has significant cultural connotations and some of those affected by the condition described the added struggle in maintaining the social norms expected by their cultural/ethnic group. This aspect was particularly emphasised in a study looking into challenges faced by black ethnic minorities living with IBD (Alexakis et al, 2015). Similarly, some patients reported that the condition interfered with their religious eating practices; the same study suggest that more than half of those interviewed could not fast during Ramadan as a consequence of their condition.…”

Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis

“…Concerns about possibly requiring surgery and / or a A c c e p t e d M a n u s c r i p t Manuscript Doi: 10.1093/ecco-jcc/jjy020 support networks in patients with a chronic illness can facilitate effective coping, positively influence health status and improve outcomes of disease [46]. Family support, particularly that provided by parents, plays a vital role in the development of children and adolescents with IBD [47].…”

Experiences of Ethnic Minority Patients Who Are Living with a Primary Bowel Condition or Bowel-Related Symptoms of Other Chronic Diseases: A Systematic Review

“…Seven studies were conducted in the UK (31)(32)(33)(34)(35)(36)(37), seven in the USA (38)(39)(40)(41)(42)(43)(44) and one in Malaysia (45). Study design varied and included six case-controlled studies (34,35,39,40,42,44), three survey-based studies (32,33,38,41,43), three qualitative studies (31,36,37), and one cohort study (45); focussing on IBD (31,(33)(34)(35)(36)(37)(39)(40)(41)(42)44), IBS (43,45), prostate cancer (including bowel-related side-effects of treatment) (38) and coeliac disease (32). Studies recruited participants from various ethnic minority groups including South Asians, African Americans, Blacks, Hispanics, and Chinese.…”

“…Based on CASP and CEBMa quality criteria, there were seven good (four star) quality studies (31,(35)(36)(37)40,42,45), and eight moderately good (three star) quality studies (33,34,38,39,41,43,44).…”

“…Jackson & Shaukat (40) found that there were no signi cant differences in the setting in which CD was diagnosed for US African American and White patients (clinic: 31% versus 61%; hospital: 47% versus 27%, p = ns [not reported]), the number of disease ares (3.69 versus 3.1 visits per year), and the duration of symptoms before diagnosis (mean duration of disease 3.5 versus 5.3 years). Alexakis et al (31) reported that IBD was sometimes misdiagnosed amongst UK South Asian and Black participants as tuberculosis, IBS, stress with diarrhoea or psychosomatic disorders.…”