Fifteen studies were identified; with a mixture of good and moderately good quality, which explored a range of diverse experiences of ethnic minority patients from UK, US and Malaysia living with IBD, IBS, coeliac disease and bowel symptoms following prostate cancer treatment. Culturally relevant IBD and coeliac disease information/education was needed for UK South Asians due to low awareness, language and literacy barriers, and illness perceptions e.g., private nature of IBD. Muslim South Asians living with IBD used religious self-management to understand illness experiences and had difficulty in managing symptoms (e.g., fear/risk of incontinence) to fulfil religious activities. UK South Asian and Black individuals had problems with IBD diagnosis/misdiagnosis. Ethnic minority populations across countries experienced poor dietary intake (e.g., GFD), cultural conflict in self-managing one’s diet (e.g., spicy food), raised IBD-related anxiety and poor-quality healthcare services, particularly primary care in the UK. Mixed findings on the disease presentation experiences showed that the nature of conditions was sometimes similar (e.g., coeliac disease in South Asians), and at times extensive (e.g., UC in Bangladeshis), compared to White populations. Medicine adherence experiences were mixed; some ethnic minority patients had poorer medicine adherence (e.g., US Blacks and African Americans) and some had similar medicine adherence (e.g., US Black), compared to White patients. Some South Asians also used CAM alongside medication.
Low IBD awareness amongst South Asians (and relevant others), generally due to language barriers (36,37), has previously been reported for other chronic illnesses such as cancer and cancer-related services e.g., colorectal screening (46,47), and may indicate generational differences, including older generations for whom English is a second language. Understanding of illnesses may need to be facilitated by cultural relevant information (31–33,36,37), cultivated with linguistic considerations e.g., use and meaning of non-equitable terms – such as ‘Crohn’s’ ‘Disease’ - in other languages (36). What constitutes as an illness may differ cross-culturally and from Western descriptions (19). The perception, expression and management of an illness and its symptoms (e.g., pain) may be shaped by different cultural influences (e.g. belief systems), psychosocial factors and relationship structures, which healthcare professionals need to be aware of (19,48). IBS for instance, can be conceptualised in terms of emotions (e.g., anxiety, depression) by Indians, hence why there may often be a stigma related to psychological instability in this community. In comparison, Mexicans who value family relationships often attribute emotions (e.g., stress) in relationships to IBS, while Chinese individuals may appraise their connection with their environment; during symptomatic periods, they may express a sense of imbalance with their environment and need to regain this balance through self-management (48).
Using diet to manage symptoms (31,36,37), has been widely reported e.g., avoiding spicy food (20,49) and dining outdoors (49), although this review found that poor understanding of dietary choices of young people with IBD were often not aligned with traditional norms of parents, in-laws or extended family, creating psychological issues (e.g., anxiety) and generational conflict (31,36,37). Dietary changes from migration/acculturation lead to poor meal intakes for Hispanics living with IBD (39), and is supported by previous studies; in Norway, Pakistani and Sri Lankan migrants reduced intake of beans and lentils (50), and Pakistani women increased dairy intake (51). UK South Asians had higher energy and fat intake and lower carbohydrates (52), while Canadian South Asian children had higher intake of fat and refined sugars, and lower intake of fresh fruit and vegetables compared to their parents and grandparents (15). Literacy issues can have an impact on the efficacy of recommended dietary changes (e.g., understanding food content, acceptability or access to proposed food such as GFD, understanding what constitutes as high and low FODMAP diets) (53–55), as found in this review, South Asians with coeliac disease consumed more gluten compared to White Caucasians since they did not understand food labelling (32).
Stigma related to IBS and IBD were widespread across ethnic minority patients in relation to gender expectations (e.g., conceiving children), and personal relationships (36,43), although such stigma has been reported in other ethnicities (21,56,57). Confidentiality in discussing bowel symptoms were also relevant to Pakistani women with urine incontinence (36,58). Anxieties around IBD symptoms (e.g., fear of incontinence and bowel movements) on managing daily religious duties based on physical purification for Muslim South Asians (31,36,37), has been previously reported with other bowel-related conditions such as IBS (59), colostomy procedures (60,61) and in urinary incontinence (20,58). Since certain bowel symptoms may nullify the state of purification, during symptom flare-ups there may be additional self-management challenges due to the repeated need for purification and needing to be near washing facilities (62); these challenges may be heightened during religious months such as Ramadan, and the Hajj pilgrimage (60,61). Guidance in using medication during Ramadan could be addressed in future interventions (37). Religious actions were noted to have positive impact on experiences of IBD in our review (31,36,37), however other studies revealed that surgical interventions may also reduce QOL (60,61,63). A literature review (61) of stoma patients found that perceptions of symptoms (e.g. uncleanliness) had a negative impact on psychological, religious and spiritual well-being since patients were restricted in fully immersing themselves in religious activities after surgery e.g., participation in congregational prayer in mosques and limited frequency or complete cessation of prayer. Fear of damaging the stoma was mentioned as a contributing factor to ceasing fasting in Ramadan, though medically safe (60,61).
Better healthcare services are needed (31,32,34,36,40,42), and evidence of generally poor health outcomes for ethnic minority groups in the UK and US (31,32,34,35,40,44), suggest the need for a deeper consideration of existing inequalities (20). Earlier studies have also found that US Asians had high unscheduled hospitalisations and African Americans had high emergency department attendance for CD (2). Access disparities in IBD treatment varied across UK regions, where South Asians and Eastern Europeans were significantly less likely to be hospitalised compared to British Whites, while in other areas compared to British Whites, Afro-Caribbeans received significantly less treatment (64). Findings should be taken with the caveat that summarising data across countries may overlook the interactions created between an individual and their environment e.g., socioeconomic factors in accessing medical care may be more relevant to the US, where most ethnic minority patients are likely to be on Medicaid (2), as found in this review (42). In the UK, reasons for disparities are more ambiguous (65). Proposed explanations include discrimination, language preferences, gender choice of healthcare professionals (66), and the lack of awareness of services (65). Inequitable provisions to manage language diversity, as found in gastroenterology services in this review (36), has previously been found to influence communication with healthcare professionals (58,65).
To our knowledge, this has been one of the few studies reviewing literature on the experiences of ethnic minority patients’ living with bowel conditions or symptoms. At full text screening, we excluded potentially relevant papers on cancer screening for bowel illnesses since they included participants who may not have pre-existing chronic bowel conditions; however, these papers may have been useful in understanding attitudes of the wider community and needs to be explored. Caution should be taken when applying the findings of the review, as some studies did not account for the diversity within a population e.g., defining ethnicity as ‘Blacks’ and ‘Hispanics’, implying that researcher approach to defining ethnicity needs to be reported. One finding may be relevant for an ethnic group in one environment but not others (2). We included two studies that did not fully specify the ethnic group of participants from Hispanic backgrounds (43,44), e.g., Yarur et al. (44) described participants as those from Latin America descent, and Spanish and Portuguese origins, and Caribbean, Black or Other (44). We accepted the search term ‘Hispanic’ as a baseline descriptor of ethnicity therefore included these studies.