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


 Background: Prevalence of chronic gastrointestinal diseases has been rising amongst ethnic minority populations in Western countries, despite the first-generation migrants originating from countries of low prevalence. Differences caused by genetic, environmental, cultural, and religious factors in each context may contribute towards shaping experiences of ethnic minority individuals living with primary bowel conditions. This review aimed to explore the experiences of ethnic minority patients’ living with chronic bowel illnesses and bowel-related symptoms of other chronic diseases. Methods: We systematically searched for qualitative, quantitative, and mixed methods studies on eight electronic databases and manually searched reference lists of frequently cited papers. Fifteen papers met the inclusion criteria: focussing on inflammatory bowel disease, irritable bowel syndrome, coeliac disease and prostate cancer survivors experiencing bowel symptoms. Results: Core themes were narratively analysed. South Asians had limited understanding of their illness and language and literacy barriers, particularly older generations, suggesting a need for culturally relevant inflammatory bowel disease and coeliac disease information. Family support was limited, and Muslim South Asians referred to religion to understand and self-manage inflammatory bowel disease. Ethnic minority groups across countries experienced poor dietary intake for coeliac disease and inflammatory bowel disease, cultural conflict in self-managing diet for inflammatory bowel disease, increased anxiety, and the need for better quality of, and access to, healthcare services. UK ethnic minorities had problems with IBD diagnosis/misdiagnosis. Self-efficacy positively impacted bowel symptoms in prostate cancer survivors. Conclusions: Cultural, religious, and social contexts, together with language barriers and limited health literacy influenced experiences of health inequalities for ethnic minorities with chronic bowel diseases.


Literature search
Search terms were nalised using the Sample, Phenomenon of interest, Design, Evaluation and Research type (SPIDER) framework (see Table 1 and Supplementary Appendix 1) (24). The SPIDER framework (24) is a systematised search strategy tool that facilitates rigour and con dence in the retrieval of studies in reviews, similar to the PICO (25), though the SPIDER framework allows more exibility for considering various study designs (e.g. qualitative and mixed methods research) than PICO which is suited speci cally for quantitative studies (24,25). We searched for qualitative, quantitative, and mixed methods articles on eight electronic databases (CINAHL, PubMed, PsychINFO, Psychology and Behavioural Sciences Collection, Ovid, Embase, Academic Search Primer, and Google Scholar), and manually searched reference lists of frequently cited papers. The search was limited to articles published in the English language, since 2000, re ecting the timeframe for signi cant developments in medical interventions in conditions such as IBD in the last 20 years (26, 27), and the rising incidence of primary bowel conditions in ethnic minority populations (1)(2)(3).

Inclusion and exclusion criteria
We conducted a prior scoping review and based our inclusion criteria on this. The search included people of all ages and studies that were: 1) full text original research articles; 2) published in English, since 2000; 3) all ethnic minority participants (as described by authors) or report ndings from ethnic minority participants separately from non-minority group participants; 4) resident of countries such as the UK, USA, Australia and New Zealand; 5) any bowel condition or chronic illness causing or leading to bowel symptoms; 6) any qualitative, quantitative or mixed methods designs. We excluded studies that: 1) did not clearly describe participant ethnicity e.g., non-white; 2) the bowel condition or symptom is not explicitly linked to patients' experiences; 3) experiences of carers, parents, or healthcare professionals; 4) studies on international travellers who are not resident of a country.

Study selection
A PRISMA diagram was used to report the application of the inclusion and exclusion criteria and the selection of nal papers for review (Fig. 1).
Data extraction, quality assessment and analysis All titles, abstracts and full texts were screened by one reviewer (SA); in addition, a random 10% of titles and abstracts were screened by two other reviewers (PDN, OO) and 10% of full texts were screened by three reviewers (PDN, OO, LBD). Disagreements were resolved by discussions and clari cation of the inclusion/exclusion criteria as needed. Two recognised critical appraisal tools were used to critique each included paper and informed data extraction: The Centre for Evidence-Based Management Critical Appraisal (CEBMa) for survey-based studies (28), and the Critical Appraisals Skills Programme (CASP) for qualitative, case-controlled and cohort studies (29). Quality appraisal was reviewed by two reviewers (SA, OO). Due to heterogeneity of designs across studies, a data-driven approach to thematic analysis was taken to identify core themes of patient experiences and this was summarised narratively (30).

Disease presentation experiences
There were mixed ndings on the disease presentation of CD between ethnicities in two US studies (40,42 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.
Several UK and US studies reported the need for better healthcare services for ethnic minority patients (31,32,34,36,40,42). Attendance at coeliac disease and UC follow-up appointments was more common for White patients compared to other ethnicities in two UK-based studies (32,34). For instance, Farrukh and Mayberry (34) found that South Asians with UC were signi cantly less likely to be given appointments with a consultant (z = 1.66, p = < 0.048) and more likely to be discharged from hospital follow-up (z=-2.3, p = < 0.01). Majority of the consultants seen by these patients were European and male. Butterworth et al. (32) reported that compared to White Caucasians (author description of ethnicity), South Asians living with coeliac disease were less likely to attend dietician consultations (62.5% versus 21%, p = 0.005) and they were signi cantly dissatis ed with information provided by clinicians and dieticians (8.47% versus 30%, p = 0.03) and dietetic advice (6.35% versus 30%, p = 0.01); reasons for both these experiences were unclear (32,34). The former study (34) also highlighted that the number of screening colonoscopies offered to White Europeans (43%) was higher compared to South Asians (32%), although this was non-signi cant (z = 0.9, p = ns [not reported]).
Two studies found that IBD-related surgeries were similar across ethnicities (34,42). Farrukh and Mayberry (34) found that surgery (n = 3 versus n = 7) and death rates (n = 1 versus n = 3) were similar for UK South Asians and White Europeans. Experiences of post-surgery complications have been reported in two studies (35,44). Goodhand (42). However, in the former study (36), many South Asians also used complementary and alternative medication (CAM) alongside prescribed medication (e.g. Ayurvedic medicine and Isabgol), and some consulted faith healers. Another study (37) revealed that UK South Asian Muslims had unclear information on whether they could use medication during the fasting hours of Ramadan, which in uenced adherence.

Psychological health experiences
Two UK-based studies found experiences of increased IBD-related anxiety amongst South Asians (33,36). In addition, Mukherjee et al. (36) found that due to the fear of becoming symptomatic, other IBD-related emotional experiences (e.g. depression and feeling low) played a role in inhibiting engagement of social activities during asymptomatic periods. Campbell et al. (38) reported that African American prostate cancer survivors who had higher self-e cacy, also had better symptom-related QOL in relation to urinary (0.59, p = < 0.01) and bowel function (0.57, p = < 0.01). Those with higher self-e cacy also had better general health QOL in relation to physical functioning (0.65, p = < 0.01) and mental health (0.68, p = < 0.01).

Sociocultural experiences
Awareness of bowel condition and need for culturally relevant information Low IBD awareness amongst UK South Asians and the wider community was reported by two studies (36,37). Mukherjee et al. (36) found that the South Asian community had di culty understanding IBD because there was no substitute word for 'Crohn's' in some languages and there were different connotations of the word 'disease' as found in the illness in ammatory bowel disease -for example disease may infer infectious or life-threatening illnesses. Communication about bowel symptoms with other people was perceived as private due to factors such as embarrassment, stigma (e.g., concerns about marriageability and conceiving children) and con ict around cultural expectations e.g., gender roles for a women's ability to manage childcare and housework, and a men's ability to be a provider. In another study (43) (37) reported that younger UK South Asians who were pro cient in English were able to access and understand information, but there was little culturally relevant information for parents who had English as a second language. The need for culturally relevant information and education for UK South Asians living with IBD and coeliac disease was identi ed by four studies (31)(32)(33)36). Conroy and Mayberry (33) provided UC information in English, Hindi, Gujarati and Punjabi; they found that all participants found these lea ets useful, and the majority (95%) believed that their doctor needed to provide more support by addressing language problems. The majority of participants (95%) also wanted to learn more about their condition and felt that these information lea ets should be available in GP surgeries (62% of participants), public places (48% of participants), and chemists (38% of participants). Additionally, Jackson & Shaukat (40) reported that both US White and African American participants felt equally informed about CD. Butterworth et al. (32) found that more UK White Caucasians living with coeliac disease signi cantly reported that they never ingested gluten (p = 0.04), or ingested gluten less than once a month compared to the South Asians (p = 0.03), suggesting that the management of gluten free diet (GFD) in South Asians may need to be different to White Caucasians, who were more likely to understand food labelling, had access to gluten-free products and were members of the Coeliac Society (charity). A Malaysian study (45) found poor low fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP) diet in Chinese, Indian and Malays. Those who completely or partially complied with the diet improved IBS-related bowel symptoms e.g., atulence (87.5%), bloating/distension (70%) and abdominal pain (60%).

Experiences of dieting
Three UK-based studies showed that self-management of diet revolved around avoidance of certain food to reduce symptoms (31,36,37). Although, sometimes there was a con ict and struggle with cultural norms where food was shared (e.g. spicy food, religiously blessed food, family functions and women living with in-laws), which meant that patients had daily practical and emotional issues e.g. anxiety, social exclusion, a sense of loss, social pressure to eat, di culty getting others to accept their chosen diet and guilt around becoming a burden (31,36,37). Those participants who compromised on attending social events, sometimes brought separate packed food or had others prepare separate meals for them (31). One study (37) found that little IBD awareness amongst elders also caused tensions in understanding the chosen diet of young people, who found it was di cult to decline requests of elders who encouraged them to eat certain foods that were perceived to be healthy. Con ict led to practical and emotional toll such as hurtful comments about appearance including weight.

Experiences of social support
Social support for South Asians was limited (31,36,37) due to language barriers, lack of culturally relevant information, relying on information from lay sources and for younger patients, di culties of explaining or censoring information to parents to avoid burdening them e.g. mentioning the chronic nature of IBD (31,37). Some South Asian parents believed that IBD was related to ulcers or poor diet and did not know whether they should inform their child's school (31). Disruption to education was also reported by various ethnic minority groups (31,37), including little integrated IBD understanding and care for young people at schools, which could result in bullying (31).

Experiences of religious self-management
Three studies found that religious coping was important for self-managing IBD, particularly for UK South Asian Muslims. Religious actions had a calming effect (e.g. understanding why participants are experiencing illness and dealing with pain), and believing that IBD was a test from God (31,36,37). Support from religious leaders (e.g. empathy and lea ets on religious guidance during Ramadan) was also noted as bene cial for some Muslims (31). Additionally, managing symptoms was important to participate in Islamic worship (31,36,37); fear of incontinence and anticipated bowel movements created anxieties for Muslims around maintaining ablution (an Islamic ritual that forms the basis of performing various types of worship such as prayer) (31,36), preserving a clean place of worship and avoiding interruptions to prayer (31).

Discussion
Fifteen studies were identi ed; 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 di culty in managing symptoms (e.g., fear/risk of incontinence) to ful l 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 con ict 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 ndings 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)(32)(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 in uences (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 con ict (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 re ned sugars, and lower intake of fresh fruit and vegetables compared to their parents and grandparents (15). Literacy issues can have an impact on the e cacy 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)(54)(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). Con dentiality 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 puri cation 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 puri cation, during symptom are-ups there may be additional selfmanagement challenges due to the repeated need for puri cation 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 signi cantly less likely to be hospitalised compared to British Whites, while in other areas compared to British Whites, Afro-Caribbeans received signi cantly 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 in uence 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 ndings of the review, as some studies did not account for the diversity within a population e.g., de ning ethnicity as 'Blacks' and 'Hispanics', implying that researcher approach to de ning ethnicity needs to be reported. One nding 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.

Conclusions
This review has explored experiences of ethnic minority patients living with bowel conditions/symptoms across contexts, but signi cant gaps remain in unearthing the experience and perspective of individuals who may not be able to speak easily in English. Further qualitative work is needed to understand the cultural sensitivity of such experiences, and to build on extant preliminary data on experiences of psychological health, social support, and religious self-management. There is a need to culturally tailor information for young people who require support from older generations, and to address language and literacy barriers for patients/parents in healthcare services. More research is needed to understand and test the acceptability and feasibility of tailored information. Inequalities in healthcare services, and health outcomes suggest multilevel contextual factors may be at play, speci c to the countries in question. A generational and religious lens in understanding contextual experiences of ethnic minority groups may be necessary to understand, for example, cultural con ict in relation to diet. Future research with ethnic minority populations experiencing other bowel-related conditions, such as stoma and anterior resection syndrome following treatment for rectal cancer, is required.