General Practice

Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study

Trisha Greenhalgh, senior lecturer,  Cecil Helman, senior lecturer,  A Mu'min Chowdhury, research fellow. 

Qualitative Research Unit, Joint Department of Primary Care and Population Sciences, University College London Medical School/Royal Free Hospital School of Medicine, Whittington Hospital, London N19 5NF

Correspondence to: Dr Greenhalgh p.greenhalgh{at}ucl.ac.uk

	Abstract

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Objective: To explore the experience of diabetes in British Bangladeshis, since successful management of diabetes requires attention not just to observable behaviour but to the underlying attitudes and belief systems which drive that behaviour.
Design: Qualitative study of subjects' experience of diabetes using narratives, semi-structured interviews, focus groups, and pile sorting exercises. A new qualitative method, the structured vignette, was developed for validating researchers' understanding of primary level culture.
Subjects: 40 British Bangladeshi patients with diabetes, and 10 non-Bangladeshi controls, recruited from primary care.
Result: Several constructs were detected in relation to body image, cause and nature of diabetes, food classification, and knowledge of complications. In some areas, the similarities between Bangladeshi and non-Bangladeshi subjects were as striking as their differences. There was little evidence of a fatalistic or deterministic attitude to prognosis, and most informants seemed highly motivated to alter their diet and comply with treatment. Structural and material barriers to behaviour change were at least as important as "cultural" ones.
Conclusion: Bangladeshi culture is neither seamless nor static, but some widely held beliefs and behaviours have been identified. Some of these have a potentially beneficial effect on health and should be used as the starting point for culturally sensitive diabetes education.

	Introduction

Successful management of diabetes requires that we understand the lifestyle, beliefs, attitudes, and family and social networks of the patients being treated.¹ Qualitative methods are particularly useful when the subject of research is relatively unexplored and the research question is loosely defined or open ended.² With two recently published exceptions ^{3 4} and a small British study based entirely on individual interviews,⁵ such methods have rarely been used in the study of diabetes.

Anthropological analysis accepts that there are three levels of cultural behaviour: what people say they do (for example, during an interview), what they are actually observed to do, and the underlying belief system which drives that behaviour (Hall's "primary level culture"⁶). In addition, consideration must be given to the wider context in which the behaviour takes place. In particular, the British Bangladeshi informants in this study must be viewed as members of an atomistic rural society living as recent immigrants in a socioeconomically deprived urban environment (see box).

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	Subjects and methods

Subjects
After gaining approval from local research ethics committees, we recruited patients from three general practices in east London known to have a high proportion of Bangladeshi patients. Using computerised diabetes registers where available, and otherwise by manual search of case notes, we identified patients with diabetes and approached them to request a tape recorded interview. Recruitment was usually by letter followed up by telephone call, but in one practice we recruited opportunistically through practice receptionists when patients came to book appointments or collect prescriptions. In all, 40 of the 44 Bangladeshi subjects we approached agreed to be interviewed.

Methods
The research methods used are summarised in the box. We allowed the subjects to tell their story in their own words and in no particular order, but we used a checklist of semistructured prompting questions to make sure that the domains listed in the box were covered at some stage by all subjects.

Translation
Interviews with Bangladeshi subjects were conducted in Sylheti, a dialect of Bengali spoken as a first language by all our Bangladeshi subjects. Since Sylheti has no written form, the interviews were simultaneously translated and transcribed by an independent translator and were all checked by AMC (a Sylheti anthropologist), who listened to the original recording while reading the draft translation.

Analysis
Transcripts were analysed with NUDIST software. The entire text of the interview was entered onto a computer database and text blocks were coded into 11 broad categories of statement such as body image, information sources, professional roles, and so on.

The objective of the analysis was to identify constructsthat is, provisional inferences about primary level culture drawn from statements and observations.⁹ Using the powerful cross referencing facility of the software, we considered together all statements relevant to each construct and modified the construct accordingly.

Validation
An important technique for demonstrating the validity of qualitative findings is triangulationcomparing data obtained by one method with similar data obtained by another method.¹⁰ After developing the constructs, we presented them to a smaller sample of the subjects to determine whether our interpretation of the initial interviews had been correct. For this, we used two methods, the first being a further set of sex specific focus groups in which we presented our initial constructs and recorded the group's responses on videotape. In the second, we developed the new qualitative technique of structured vignette.

Structured vignette We presented our constructs in the form of a story recorded on tape about Mr (or Mrs) Ali, a person with diabetes. The story was first played in full and then played back slowly, sentence by sentence. After each sentence, the tape was stopped and the subject asked: "Do you agree that this person would have [acted in this way/thought this/etc]?" (A sample paragraph of the vignette is reproduced in the appendix.) The vignette included some deliberately incorrect statements to check that subjects were not simply agreeing with all the statements. This method was developed to avoid the problems, which have been well documented in non-European cultures,¹¹ of asking informants to respond to closed questions about their own beliefs or behaviour, which would require them to challenge directly statements made by the interviewer. We performed the structured vignette study on a sample of 18 subjects, and repeated it on 10 of these same subjects after an interval of two months. The internal reliability of the technique was high (overall, 89% of questions received identical answers on repeat interview).

	Results

Sources of explanatory models
The desire of the informants to understand and explain the onset and experience of illness was often strong. However, it tended not to lead to a systematic search for professional or scientific explanations but rather to a reflection on personal experience and the experiences of friends and relatives. Lay sources of information were frequently cited as a major influence on behaviour. In the structured vignette study, 17 of the 18 informants agreed that the best way to find out about diabetes was to ask friends and relatives.

Constructs

Body concepts
Youth and health were usually viewed as virtually synonymous, and physical degeneration and weakness as an inevitable consequence of aging"Once you are 40 eyes tend to give trouble. I am almost 55. So I am expected to have bad eyesight" (Bangladeshi man).

In contrast, Crawford's study of white women in the United States indicated that "health" for them was not merely the absence of illness but had to be earned by taking positive action in terms of diet and exercise in leisure time.¹²

Both men and women chose photographs of large individuals when asked to "pick out the healthiest person." Large body size was generally viewed as an indicator of "more health" and thinness with "less health," but many also perceived that "too much health" (that is, too large a body size) was undesirable, especially if the body is weakened by diabetes. Airhihenbuwa has discussed the phenomenon of immigrants holding simultaneously both "traditional" constructs (deeply rooted values and perceptions drawn from the culture of origin) and "recent" ones (drawn from the host culture and less likely to be enduring in the long term).¹³

Origin and nature of diabetes
Illness was generally attributed to events or agents outside the body rather than to primary failure of an organ within it. This model may reflect the predominance of acute infectious illness in the recent cultural history of this group. All informants believed that the primary cause of diabetes, and that of poor diabetic control, was too much sugar and, to a lesser extent, other features of a Western diet, both of which feature strongly in folk models of other cultural groups. ^{2 4 14 15}

Other aetiological factors mentioned by the Bangladeshi informants included heredity (the notion of an agent transmitted through "shared blood" rather than an inherited predisposition) and germs. Many informants mentioned physical or psychological stress, either as a perceived cause of diabetes or simply when reporting the experience of daily lifeespecially in relation to economic difficulties, poor housing, and fear of crime.

Impact of diabetes
The diagnosis of diabetes was generally seen as devastating, and the expression "I was spoiled" was used by several informants. Virtually all felt that diabetes was a chronic, incurable condition and a potential threat to life. They feared acute complications (collapse and "dropping dead"), and a minority volunteered specific long term sequelae in the heart, eyes, and kidneys. Control of diabetes (and therefore reduction in disability and prolongation of life) was felt to lie in restoring the body's internal balance via taking particular foods and fighting the "germ" with medicine.

Many informants expressed difficulty obtaining food that was both acceptable and palatable. Other practical difficulties included confusion over sickness benefits; language barriers when speaking to professionals, especially the use of children as interpreters; and the inability to understand leaflets, either because of the concepts presented or because the leaflets were printed in standard Bengali (some informants said they were better able to understand the English alphabet, such as in road signs or notices, than standard Bengali).

Diet and nutrition
In the pile sorting exercise, foods were not grouped according to Western notions of nutritional content but in terms of their perceived strength (nourishing power) and digestibility. "Strong" foods, perceived as energy giving, included white sugar, lamb, beef, ghee (derived from butter), solid fat, and spices. Such foods were considered health giving and powerful for the healthy body and suitable for festive occasions, but liable to produce worsening of illness in the old or debilitated. "Weak" foods, preferred in the everyday menu and for the old or infirm, included boiled (pre-fluffed) rice and cereals.

Raw foods, and those that had been baked or grilled, were considered indigestible, as were any vegetables that grew under the ground. Foods of low digestibility were considered unsuitable for elderly, debilitated, or young people. Thus, the recommendation for diabetic patients to bake or grill foods rather than fry them may not accord with cultural perceptions of digestibility.

The structured vignette study showed almost universal agreement that strong foods, solid fat, and ghee should be avoided in diabetes. All 18 agreed that Mr Ali should not eat spicy foods because of his diabetes and that a person with diabetes should eat a different diet from the rest of the family.

Some informants indicated that body components may be linked to certain foods because of physical similarity. For example, sugar, butter, ghee, body fat, bone marrow, semen, and white vaginal discharge were perceived by some to be the same fundamental entity, because their colour is the same and they all solidify when cool and liquefy when heated. Eight of 18 informants in the structured vignette study thought that molasses (a dark form of raw sugar, liquid at room temperature) was an acceptable substitute for sugar in the diet.

"Sugar is the white substance that is stored in the bone marrow, is it not? From this semen is produced. Since I have diabetes, I have come to think that [it is] because of using the semen more. When the `calcium' inside the bone is exhausted at that time our diabetes starts" (Bangladeshi man in focus group). This statement brought general agreement in the focus group. These findings are consistent with Lambert's work on the traditional South Asian "humoral" concepts of health, which centre on the ecological flow of substances and qualities between the environment, food, and the human body.¹⁶

Many informants believed that the same amount of rice could be taken as frequent small meals since it was imbalance, rather than total quantity, that mattered. In the structured vignette study, 16 of 18 informants agreed that Mr Ali's doctor had underestimated the amount of rice he needed when advising him to reduce his food intake, and all 18 agreed he should take biscuits or other snacks between meals to sustain his strength. Only five thought that such snacks could cause any harm.

In Bangladeshi society, feasts, festivals, and social occasions are common, culturally important, and centre on eating sweet and rich food. A calculated compromise between dietary compliance and social duty was usually made.

Smoking
Of our Bangladeshi informants, nine of the 23 men and none of the 17 women smoked; only a few took paan (chewing tobacco) regularly, and those who did acknowledged that it was harmful and expressed a desire to quit. In the structured vignette study, only four of 18 informants disagreed that tobacco was harmful.

Concepts of balance
Many cultures equate balance with health and imbalance with illness.¹⁷ There was a strong and almost universal belief among the Bangladeshi informants that both the onset and the control of diabetes depended on the balance of food entering the body and on balanced emission of body fluids such as sweat, semen, urine, menstrual blood, etc. Excess emission was perceived to deplete the internal stock, low quantity of emissions to indicate inner build up and putrefaction, and thin quality a weakening of the internal stock. Weakness (as in diabetes) was perceived to occur as a result of such depletion or weakening.

Absence of sweating (due to the cold British climate and lack of physical labour) on immigration to Britain was commonly cited as a cause of diabetes and a reason why the condition improved or disappeared on return to hot countries. In the structured vignette study, 14 of 18 informants agreed that if Mr Ali returned to Bangladesh his diabetes might be cured.

Exercise
Exercise in the context of health and fitness seemed to have little cultural meaning for the Bangladeshi informants, even though they often recalled specific advice on this topic from their doctor. Exercise was viewed as potentially exacerbating illness or physical weakness. The association between sweating (see above) and exercise in leisure time was not made by any informant, but ritual Muslim prayers (namaz) were often cited as a worthy and health giving form of exercise.

The Sylheti language has no expression for physical activity that has the same connotations of vitality, improvement in body condition, social desirability, and inherent "moral" value as the word "exercise." Sports and games are not generally pursued by adults in Bangladesh¹⁸ or by Bangladeshis in Britain.¹⁹ The closest translation for the word "exercise" is "beyam," a word of obscure etymology. Interestingly, the prefix "bey" in Sylheti often has negative connotationsfor example, "beyaram" (meaning illness, literally "no comfort") or "beytamiz" (poor etiquette, literally "no manners")and we were struck by the lack of positive connotations accorded to the concept by our Bangladeshi informants compared with the white British and Afro-Caribbeans.

Some informants gave physical or material constraints to taking exercise. In particular, many of the women rarely left their house, apparently through fear of physical attack. Some informants lived in high rise flats with no working lift, and some commented on the absence of parks, dirty pavements, and street crime.

Professional roles
The doctor was viewed as a busy, authoritative and knowledgeable person who rarely makes mistakes and has full understanding of the conditions he or she treats. Several informants felt that the doctor's instructions should always be obeyed, and 12 of 18 in the structured vignette study agreed that "Mr Ali's doctor [general practitioner] knows everything about diabetes." Twelve also agreed that it would be impertinent for Mr Ali to ask the doctor any questions. In contrast, both white British and Afro-Caribbean informants were openly assertive and critical of health professionals. Nurses were sometimes viewed in a traditional caring and technical role but were sometimes recognised as providers of information and advice.

Diabetic monitoring
Informants generally tested their urine regularly, and all who did so seemed to understand the importance of a change in the colour of the test strip. Most informants seemed to believe that, in the absence of symptoms, diabetes was well controlled. The need for regular surveillance when asymptomatic was rarely acknowledged, and only one of 18 informants in the structured vignette study thought that Mr Ali should ever visit the doctor if he did not feel ill. Preventive care was not well understood"He [the doctor] explained to me and said before complications start, start wearing glasses. This is because your eyes are all right. The diabetes may affect either your eyes or your feet. So if you take the glasses, your eyes may be spared" (Bangladeshi man).

	Discussion

Strengths and limitations of the study
This study addressed an important and previously underexplored subject in health research.²⁰ We used a wide range of qualitative techniques on a sample that is likely to have included the least acculturated members of British Bangladeshi society, since we recruited from practices with Bangladeshi general practitioners, nurses, or advocates, we required neither literacy (in any language) nor spoken English or Bengali for participation in the study (indeed, 24 of the 40 informants spoke only the Sylheti dialect), and the response rate for the individual interviews was high (91%). Furthermore, our main field worker was an experienced anthropologist who has worked with this community for 25 years and speaks Sylheti as his first language.

Implications for policy and practice
Although the differences in body image and illness maps shown here are of considerable anthropological interest, we believe that our findings support the notion that the similarities in health beliefs and health related behaviours (for example, failed attempts to lose weight or give up smoking) between minority groups and the host culture are often understated and may be of more practical importance than their differences.²¹

	Acknowledgments

Contributors: TG conceptualised and supervised the study, helped with fieldwork, analysed and interpreted the data, and wrote the paper. AMC performed the fieldwork and data entry and analysed and interpreted the data. CH provided general advice and contributed to analysis and interpretation of the data. TG is guarantor for the paper.

Funding: The salaries of TG and AMC for this study were covered by a Health Services Research Grant from the Wellcome Trust.

Conflict of interest: None.

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