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Cultural barriers in chronic disease managment
- 1. CULTURALLY INFLUENCED BARRIERS IN CHRONIC DISEASE MANAGEMENT
- 2. Objectives • To review Ottawa’s cultural demographics • To highlight the impact of culture on several common barriers faced in the management of chronic diseases • To review strategies to improve cross cultural care
- 3. Ottawa
- 4. Ottawa • Canadian immigrants tend to settle in big cities. • Compared to other cities, immigrants who settle in Ottawa are typically more educated, earn higher wages, and have higher levels of employment. • Ottawa receives the highest percentage of refugees and family-related immigration of any major Canadian centre. • Recent immigrants (settled within 10 years) - make up 6.8% of the population. • 18% of Ottawa’s population was born outside of Canada.
- 5. Ottawa • Third-largest West Indian community, and the second-fastest growing after Toronto. • Fourth- largest African community, and the second-fastest growing after Calgary. • Chinese community is the smallest of Canada's five largest centres, but the country's fastest-growing. • Fourth-largest Middle Eastern community. • Our European community is the smallest of Canada's five largest cities.
- 6. Ottawa
- 7. Ottawa
- 8. Ottawa
- 9. Ottawa
- 10. Chronic Disease Management • Long term management plans • Long term health impact • Lifestyle changes form part of treatment plan
- 12. Data Sources • Qualitative interview based studies • UK, United States • South Asian, Hispanic, Chinese and African American populations
- 13. Barriers • Language • Finances • Diet • Belief Systems
- 14. Language
- 15. Language • Effects first generation immigrants more • Poor fluency in English has been identified by patients as a major barrier to accessing and understanding basic health information • Poor English also limited people’s willingness to travel beyond the immediate neighborhood • Impact on food shopping, exercise, daily living
- 16. Language Interpreters Preferred professional translators over family • Power dynamic of having parents depend on children to translate • Translation of medical terms • Same gender interpreter preferred
- 17. Language •Not the only player •Only providing advice in an Asian language was ineffective as an educational intervention to encourage dietary modification in South Asian patients with diabetes in Leicester.
- 18. Language • UK Study interview based study • Caucasian British patients as well as South Asians suggested that information offered about their condition could be difficult to understand. • White male, interview no. 20: ‘‘If they talked in layman’s I would, knowing what they say what these tablets are for. It’s when they start using the technical terms . . .’
- 19. Language Health literacy is distinct from language fluency and refers to “an individual’s ability to read, understand, and use healthcare information to make effective healthcare decisions and follow instructions for treatment.”
- 20. Language • Low health literacy is more prevalent among marginalized populations • A study of 408 patients with type 2 diabetes identified that 52% of Hispanic patients versus 15% of non-Hispanic white patients had inadequate health literacy, as assessed with the English or Spanish version of the short-form Test of Functional Health Literacy in Adults. • In a survey of 22 Hispanic patients with diabetes, 91% were unfamiliar with the term A1c. • A crosssectional survey of 30 Puerto Rican adults with type 2 diabetes found that only 37% were able to identify a normal blood glucose level, and 33% could not identify long-term complications related to diabetes. • Strong English skills in the immigrant population do not ensure strong health literacy
- 21. Language How confident are you filling out medical forms by yourself? How would you rate your ability to read medical forms?
- 22. Finances
- 23. Finances • Almost 60% of Hispanic adults with diabetes have an annual income below $20,000 compared with approximately 28% of non-Hispanic whites with diabetes. • In a survey of 44 low-income Mexican-Americans with type 2 diabetes, cost was identified as a reason some patients reduced their dosage or frequency of insulin therapy. • Cost cited as a barrier to treatment in 24% of Hispanic patients with diabetes versus 8% of non-Hispanic whites.
- 24. Finances • General diabetic population in South Auckland surveyed. • Covered by government programs • Annual out of pocket costs ranged from $191 - $329 • 18-49% reported costs led to less blood glucose monitoring • 11-47% said finances impacted use of oral medications • 8-52% said that cost impacted insulin therapy
- 25. Finances
- 29. Finances
- 30. Diet
- 31. Diet • Diet specific concerns • High fat content of some Indian curries • High sugar/calorie Indian desserts • Role of rice in Chinese cuisine • Role of balance in Chinese cuisine
- 32. Diet • Incorporation in to a way of life • Travel • Visiting family • Shared meals
- 33. Diet • 45 African American patients through discussion groups: • Four areas impacting diet – habitual (meal plans lacking in taste), economic (cost of low fat, low sugar, fresh items), social (lack of family support, family pressure to cook preferred meals), conceptual (understanding food labels).
- 34. Diet • Similar barriers in South Asian and Somali populations • Added cost of culturally comfortable food (ie. Bangladeshi vegetables)
- 35. Belief Systems
- 36. Belief Systems • Disease states are an action by God • Individuals have little control over the course
- 37. Belief Systems Social stigma of illness Effects diet in group settings Deterrent to insulin treatment
- 38. Belief Systems Infancy of western medicine Concerns regarding side effects Beliefs about efficacy
- 40. Culturally Oriented Clinical Encounter
- 41. Culturally Oriented Clinical Encounter
- 42. Community Outreach Culturally sensitive and relevant programs Location Timing Program development Presenters Participants
- 43. Questions
- 44. References 1. Caballero A. Cultural Competence in Diabetes Mellitus Care: An Urgent Need. Insulin 2007; 2(2): 80-91. 2. Campos CMPH. Addressing Cultural Barriers to the Successful Use of Insulin in Hispanics with Type 2 Diabetes. South Med J 2007;100:812-20. 3. Chesla CADNSC, F.A.A.N., Chun KMPHD, Kwan CMLPHD. Cultural and Family Challenges to Managing Type 2 Diabetes in Immigrant Chinese Americans. Diabetes Care 2009;32:1812-6. 4. Dutton GR1, Johnson J, Whitehead D, Bodenlos JS1, Brantley PJP. Barriers to Physical Activity Among Predominantly Low-Income African- American Patients With Type 2 Diabetes. Diabetes Care 2005;28:1209-10. 5. Grace C, Begum R, Subhani S, Kopelman P, Greenhalgh T. Prevention of type 2 diabetes in British Bangladeshis: qualitative study of community, religious, and professional perspectives. BMJ 2008;337:1094-100. 6. Ho E, James J. Cultural Barriers to Initiating Insulin Therapy in Chinese People With Type 2 Diabetes Living in Canada. Canadian Journal of Diabetes. 2006;30(4):390-396. 7. Karter A, Stevens M, Herman W, Ettner S, Marrero D, Safford M, Engelgau M, Curb J, Brown A. Out-of-Pocket Costs and Diabetes Preventive Services. Diabetes Care 2003;26:2294–2299. 8. Law M, Cheng L, Dhalla I, Heard D, Morgan S. The effect of cost on adherence to prescription medications in Canada. CMAJ 2012. DOI:10.1503/cmaj.111270 9. Lawton J, Ahmad N, Hanna L, Douglas M, Hallowell N. 'I can't do any serious exercise': barriers to physical activity amongst people of Pakistani and Indian origin with Type 2 diabetes. Health Educ Res 2006;21:43-54. 10. Ngo-Metzger Q, Massagli MP, Clarridge BR, et al. Linguistic and cultural barriers to care. Journal of General Internal Medicine 2003;18:44-52. 11. Powers BJMHS, Trinh JV, Bosworth HB. Can This Patient Read and Understand Written Health Information? JAMA 2010;304:76-84. 12. Sriskantharajah J, Kai J. Promoting physical activity among South Asian women with coronary heart disease and diabetes: what might help?. Fam Pract 2007;24:71-6. 13. Stone M, Pound E, Pancholi A, Farooqi A, Khunti K. Empowering patients with diabetes: a qualitative primary care study focusing on South Asians in Leicester, UK. Fam Pract 2005;22:647-52. 14. Vijan S, Stuart NS, Fitzgerald JT, et al. Barriers to following dietary recommendations in Type 2 diabetes. Diabetic Med 2005;22:32-8. 15. Wallin, AnneMarie L, Monica A, Gerd RNT. Diabetes: a cross-cultural interview study of immigrants from Somalia. J Clin Nurs 2007;16:305-14.
Editor's Notes
- West indian – british speaking carribian
- Poor English also limited people’s willingness to travel beyond the immediate neighborhood (owing to difficulties in reading road names or asking directions) More of an issue in larger centres were people get around by walking and can get everything (social visits, food, prayer facilities) within walking distance.
- Chinese, south asain population agreed with this. Family don’t usually know medical terms. Worse for grandchildren and grandparent pairs – grandchildren less fluent in native language, generational differences in meaning of certain expressions etc. Even with translator, not perfect – hindi translators use different words (graves patient – lose BM or diarrhea translated to profuse watery diarrhea) Coments like “ Doctor says 5 sentences and translator says 1”
- Participants noted that language was a barrier to accepting insulin. One participant admitted that despite his competent English skills, he still had trouble understanding his doctor when she tried to explain the concept of insulin use.
- Confidence With Filling Out Medical Forms. In 3 studies patients were asked, “How confident are you filling out medical forms by yourself?”36,37,46 Responses were “extremely,” “quite a bit,” “somewhat,” “a little bit,” or “not at all.” In the 2 least-confident groups, patients had a summary LR of 5.0 (95% CI, 3.8-6.4) for inadequate or marginal literacy; those “somewhat confident” had a summary LR of 2.2 (95% CI, 1.5-3.3); and those expressing confidence were less likely to have a problem, with a summary LR of 0.44 (95% CI, 0.24-0.82) Self-rated Reading Ability. Not surprisingly, patients who acknowledge trouble reading forms and written hospital materials have an LR of 28.6 (95% CI, 16.3-52.1) for inadequate literacy. 5 However, the LR of only 0.81 (95% CI, 0.78-0.84) suggests that many patients who deny they have a problem either overestimate their reading ability or are reluctant to disclose their illiteracy. Prevalence of poor written understanding is 35% in US medicare (pre-test probability) and knowing if a patient is at high risk helps decide if you should focus more on teaching a point.
- Using data from the 2007 Canada Community Health Survey, we analyzed the responses of 5732 people who answered questions about cost-related nonadherence to treatment. We determined the national prevalence of cost-related nonadherence and used logistic regression to evaluate the association between cost-related nonadherence and a series of demographic and socioeconomic variables, including province of residence, age, sex, household income, health status and having drug insurance.
- 57%ofCanadianswithdiabetessaytheydonotcomply withtheirprescribedtherapybecausetheycannotafford theirmedications,devicesandsupplies,thuspotentially compromisingtheirdiabetesmanagement.
- Food preferences personal thing, grew up with foods, play a role in culture – eg. Glass of wine with dinner, dessert every night, festive foods.
- Finally, some families believed the patient was weakened or made vulnerable by the disease. Some spouses doubted the patient’s capacity to work at vigorous activity because restrictions on food or rice were thought to affect the patient’s energy and stamina. A central health metaphor expressed by most participants was the need for balance. Many found that disease-related food restrictions disregarded cultural concerns for balancing foods (e.g., “hot” and “cold”) understood to have specific medicinal properties according to traditional Chinese medicine (TCM). Even for those who did not specifically incorporate TCM in their diet management, the metaphor of balance was powerfully invoked. One spouse explained, “I feel that just purely eating like that with no oil or salt, you may be lacking certain nutrients. You are not balanced . . . and you would not be feeling very well.” Participants explicitly confirmed that the toughest challenge was diet: “Food. When to have it. What to have. Where to have it. I mean it’s constantly. . . .” Another participant acknowledged, “The primary conflict is always in the diet.” Disruptions in meaningful cultural food practices mentioned frequently included rice, restricting amounts of food, and changing the balance of various foods that were thought to be beneficial to general health.
- Observing a biomedically prescribed diabetes regimen required Chinese American patients to distance themselves from familiar and shared cultural food habits and practices within the family and community. Participants found that culturally meaningful, familiar, and comforting foods had to be foregone or drastically reduced, new foods had to be accommodated, and food quantity became a source of concern. Additionally, social habits, such as eating out, sharing dim sum with family and friends, and easily participating in cultural celebrations and banquets were complicated by perceived disease restrictions. South Asians sometimes felt that their traditional diet presented particular problems, for example relating to high usage of fat in South Asian cooking and the high sugar content and popularity of Asian sweets. Specific concern about coping with diet when visiting relatives in India was also mentioned.
- Practical constraints also affected dietary choices. Both male and female second generation participants reported heavy reliance on fast foods, which they saw as convenient and affordable. Traditional Bangladeshi fruits and vegetables were perceived to be expensive so were not consumed much, but first generation participants were often unfamiliar with cheaper, more readily available Western alternatives. A strict diet aimed at weight loss was rated as being similarly burdensome to insulin (median 4 vs. 4, P = NS). Despite this, self-reported adherence was much higher for both pills and insulin than it was for a moderate diet. In the focus groups, the most commonly identified barrier was the cost (14/ 14 reviews), followed by small portion sizes (13/14 reviews), support and family issues (13/14 reviews), and quality of life and lifestyle issues (12/14 reviews). Patients in the urban site, who were predominantly African-American, noted greater difficulties communicating with their provider about diet and social circumstances, and also that the rigid schedule of a diabetes diet was problematic.
- A particularly striking feature of the interviews is that when respondents talked about why they thought that they had got diabetes (and other diseases) they almost universally attributed the causes to factors outside their control. Indeed, very few imputed their own lifestyle choices and behaviours in any direct and obvious way; on the contrary, respondents tended to blame external factors such as the will of Allah/God, genetics or a change in climate and environment brought about by their migration to the UK. Many Hispanic patients with diabetes feel that their disease is a punishment from God (fatalismo), and they can do little to alter their fate.28 Such beliefs may hinder a patient’s ability to successfully manage their disease.
- These respondents described a fear and dislike of having to inject themselves, and also pointed to the stigma which could arise from being seen to inject by others: “ In our culture, you’re not wanting to show that you’ve got any kind of diseases, like diabetes, which is why we don’t want the injections.” Insulin user as failure – couldn’t control themselves/take care of them selves enough to prevent it. Insulin user seen as week and debilitated (needle treatments reserved for really sick people back home” Chinese insulin study - In this study, 5 major barriers emerged: fear of needles (e.g. fear of failure to properly perform technique or fear of pain); belief that the need for insulin meant advancing disease; belief that starting insulin indicated a past failure to properly care for oneself; social stigma attached to needle use; and fear of loss of personal freedom/inconvenience of giving injections. In China, injections are reserved for severe diseases and administered by doctors or trained medical practitioners; to the study participants, the need for injections suggested that their disease was progressing to a serious state. As a result of the associations between needle use and disease severity, an insulin user may be labelled as weak or debilitated. The social stigma associated with insulin injectionwas a major barrier to accepting insulin therapy in this study population.
- Stronger side effects of western meds compared to traditional
- Acculturation refers to the adoption of some specific elements of one culture by a different cultural group. For immigrants to the United States, it relates to the integration of multiple preferences and behaviors from mainstream culture. No uniform instrument to assess acculturation exists. Throughout the literature, various categories of acculturation can be identified: assimilation (abandonment of native cultural identity and adoption of the values and norms of the larger society), integration (maintenance of ethnic cultural integrity at the same time as becoming an integral part of a larger society), separation (self-imposed withdrawal from the larger society while preserving the native culture), and marginalization (being out of cultural contact with both traditional culture and the larger society). Body Image The concept of ideal body weight may vary among individuals within and across racial and ethnic groups. Although it would be erroneous to assume that some people prefer to be overweight, the ideal weight that people have conceptualized may be different. In some groups, being robust and slightly overweight has been considered equivalent to being well nourished and financially successful.
- This can help in clinic, but the issues are much bigger than what we can deal with in clinic – time, financial, training constraints
- Cooking, DM education, exercise clubs/walking groups Located in easy access venue, free parking Evening, weekend Developing programs in consultation with cultural leaders (ie. Church leaders) Training members of the community to deliver programs Practicalities such as getting to the venue for educational sessions were sometimes seen as barriers and most interviewees emphasised that group sessions would need to be held somewhere very convenient such as their general practice. The issue of cultural preferences in relation to education was also raised, with South Asian women in particular sometimes expressing a preference for gender specific sessions. Bangladesh study - Seeking knowledge is an important aspect of the Islamic way of life, and both lay participants and religious scholars believed that education about faith was one mechanism through which preventive messages (especially those linked to misinterpretations of religious teachings) could be conveyed. Faith was seen as linked to individuals’ confidence and motivation to change behaviour. Religious leaders were seen as trusted sources of information and support (the word Imam means teacher). They had access to large sectors of the community and were keen to incorporate messages on diabetes prevention in their teaching. They were enthusiastic about working in partnership with health professionals for mutual education and with a view to developing initiatives within the community for diabetes prevention.