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BMJ 2005;330:1247 (28 May), doi:10.1136/bmj.38460.642789.E0 (published 9 May 2005)
Julia Lawton, research fellow1, Naureen Ahmad, research associate1, Nina Hallowell, lecturer2, Lisa Hanna, research fellow1, Margaret Douglas, consultant in public health medicine3
1 Research Unit in Health, Behaviour and Change, School of Clinical Sciences and Community Health, University of Edinburgh, Edinburgh EH8 9AG, 2 Public Health Sciences, School of Clinical Sciences and Community Health, University of Edinburgh, 3 Lothian NHS Board, Edinburgh EH8 9RS
Correspondence to: J Lawton J.Lawton{at}ed.ac.uk
Design Observational cross sectional study using in-depth interviews in English or Punjabi.
Setting and participants 32 patients of Pakistani and Indian origin with type 2 diabetes, recruited from primary care and community sources in Edinburgh, Scotland.
Results Respondents reported complex and ambivalent views about OHAs, which reflected their ambivalent attitudes towards Western drugs in general. Respondents considered OHAs to be an important part of the diabetic regimen because they perceived British healthcare professionals to be competent and trustworthy prescribers, and they considered the medicines available in Britain to be superior to those on the Indian subcontinent. Despite this, some respondents made deliberate efforts to reduce their tablet intake without being advised to do so. Reasons for this included perceptions that drugs worked by providing relief of symptoms and concerns that OHAs could be detrimental to health if taken for long periods, in conjunction with other drugs, or without traditional foods.
Conclusions British Pakistani and Indian patients' perceptions of their OHAs may partly derive from popular ideas about drugs on the Indian subcontinent. Cultural factors need to be understood and taken into consideration to ensure that these patients are given appropriate advice and to avoid unnecessary changes to prescriptions.
In this study, we used a patient centred approach to a hitherto unstudied areathe attitudes of Pakistani and Indian patients with type 2 diabetes towards, and experiences of, taking oral hypoglycaemic agents (OHAs). Our objective was to inform their future care, as minority ethnic patients respond well to health related advice if it is delivered in ways that are sensitive to their views and cultural backgrounds.4
Recruitment and sampleWe recruited patients from five general practices in Edinburgh, with a high proportion of Pakistani and Indian patients. Healthcare professionals contacted patients by letter (in English, Urdu, and Punjabi), inviting them to "opt in." We also used face to face recruitment and snowballing to access respondents from Edinburgh's Pakistani and Indian communities, trying to include hard to reach groups. All respondents were either Indian (n = 9) or Pakistani (n = 23) (the proportions reflect the demography of South Asians in Scotland (2001 census)), aged 18 years and over, with type 2 diabetes. We purposively sampled respondents on the basis of their age, sex, length of time since diagnosis, and preferred language (see bmj.com). Recruitment continued until no new themes emerged from the interviews.
Data collectionInterviews were conducted in English and Punjabi. Respondents were informed that NA was not a healthcare professional and were reassured about confidentiality. Interviews normally took place in respondents' homes, averaged one hour, and were tape recorded. Interviews were translated into English and transcribed in full. We contacted some respondents after interview to clarify issues and validate findings.
AnalysisThe study was informed by grounded theory, which involves concurrent data collection and analysis, together with systematic efforts to check and refine developing categories of data. Themes and hypotheses identified in early interviews informed later interviews. Team members independently reviewed interview data, and regular meetings were held to explore respondents' underlying reasoning, discuss deviant cases, and agree on findings.
Initial reactions to taking OHAs
Respondents expressed some initial trepidation about taking OHAs, as they perceived this as signifying that their condition had deteriorated and they had taken on the identity of a sick person: "I was devastated [about being prescribed glipizide]. I wasn't happy at all. But it was explained to me that diabetes always progresses, no matter how careful you are." (R1, Pakistani, female)
Perceptions of OHAs
Despite their initial concerns, most respondents perceived OHAs as an essential part of their diabetic regimen: "Once you start on these then you have to be on them for the rest of your life. So either you do that, or you risk dying. So you have no choice but to take the medicine." (R12, Pakistani, female)
The importance attached to OHAs stemmed partly from respondents' perception that these drugs were more effective and of a better quality than those from the Indian subcontinent: "See, in Pakistan, the medications are not right, they're just a waste of time, waste of money. I mean these [referring to OHAs] are the real stuff. These are what really work." (R7, Pakistani, male)
Additionally, respondents considered British healthcare professionals to be competent and trustworthy. Most had had experiences of professionals and services on the Indian subcontinent and used these as a benchmark to assess the quality of care received in Britain. Many respondents described health professionals on the Indian subcontinent as untrustworthy: "You know how it is there, our doctors don't really pay attention. They are more concerned with the amount of money they are making. First they will give you a lighter medication, which will make you go back to them again and again until they give you something else." (R13, Pakistani, female)
In contrast, British health professionals were seen as "dealing with everybody the same... they will treat according to their condition" (R16, Pakistani, female), because they were paid directly by the NHS and did not gain financially from dispensing prescriptions. Most respondents claimed they had not sought out other treatments for their diabetes, such as herbal remedies, either in Britain or during visits to the Indian subcontinent.
Self regulation of OHAs
Less than half the respondents prescribed OHAs reported taking them as prescribed. Fifteen people described how they routinely adjusted the amount of tablets they took. Most attempted to reduce their tablet intake.
Many respondents saw it as unnecessary to take all of their OHAs when they felt well: "Sometimes you do say that to yourself, you know, you say to yourself, `Oh I feel fine and I'll take one today, I won't take two.'" (R27, Pakistani, female)
Some respondents also described deliberately skipping tablets to mitigate unpleasant short term side effects, without consulting or reporting these to health professionals: "So when I took them I would feel so much heat and I would suddenly become dizzy. So then I didn't take them." (R23, Pakistani, female)
Other respondents reduced their OHA intake when fasting or having to skip a meal, usually without seeking medical advice. These respondents were reluctant to take their OHAs without eating traditional foodstuffs, as these foods were perceived as having fortifying properties that balanced out, or counteracted, the side effects of their OHAs: "If you keep on taking tablets and not eating strengthening foods like roti, then they will affect you. If you eat strengthening foods... they will not produce dryness." (R16, Pakistani, female)
A few Pakistani respondents said that health professionals had advised them to alter their OHA intake during Ramadan and, because of this, thought they could reduce their tablets on other occasions, even though they had not been advised to do so.
Respondents articulated concerns that, if taken in excess or over long periods, OHAs could be detrimental to their health: "Yes, they told me to take it everyday, but I said `do I want to die by taking it everyday... I don't want to die by taking so many.'" (R4, Pakistani, female)
Some respondents attributed the onset of their diabetes to drugs they had been prescribed for other conditions, such as asthma, anaemia, and pneumonia and expressed anxieties about taking OHAs with other drugs.
In a few cases, respondents also believed that taking several medications together could counteract their individual effects: "Instead of giving too many tablets why don't they give one instead? Like you drink tea and it's good for your health, but if you drink tea too hot or you add something to it then there is no point in drinking the tea. It's only worth it if you could have two tablets instead of say 50." (R25, Pakistani, male)
Self regulation strategies
Self monitoring
Most commonly, respondents self monitored their blood glucose and took all their tablets only when they considered their readings to be high: "And now in the morning I take three pills, sometimes two, meaning I check it [blood glucose] and according to that I do or don't take all the pills." (R5, Pakistani, male)
In some cases, respondents were unaware of appropriate levels for blood glucose control. One man, for example, claimed that he only took all of his prescribed tablets when "it goes out of control at 18 or 19." (R26, Pakistani male)
Reducing food intake
A few respondents described how they deliberately reduced the amount of food they consumed, or skipped meals, so that they could take fewer tablets: "Sometimes I will take two when I don't spread too much jam on my toast or even sometimes I don't even spread any. If I feel like a bit of a pleasure then I will put some on and then I will take the extra tablets." (R19, Pakistani, male)
Popular ideas about medicines, derived from the Indian subcontinent, may have informed the ways respondents took their OHAs. On the Indian subcontinent, people commonly self medicate, make selective use of prescribed drugs, and abandon drugs that do not provide prompt relief of symptoms.5 6 Respondents' concerns about taking OHAs in excess may derive from popular ideas that Western drugs are powerful but inherently dangerous.7
Health professionals should try to establish how Pakistani and Indian patients actually take their OHAs, as elevated glucose or glycated haemoglobin levels might be due to missed doses rather than underprescribing. Dietary beliefs and practices should be explored as part of the consultation. Health professionals should question Pakistani and Indian patients directly and opportunistically about side effects and health problems they may be having, and stress the importance of presenting if problems arise. Key to improving adherence is good health provider-patient communication (box).8 Bilingual link workers may have an important part to play here.
Strengths and limitations
This is the first qualitative study to look in depth at British Pakistani and Indian patients' perceptions and experiences of taking OHAs. We did not use translators during the interviews, thereby enhancing the quality of the data. As we did not have access to respondents' clinical records, and did not use a longitudinal design, we cannot determine the effect of adjustment of OHAs on glycaemic control. A further limitation arises from the absence of qualitative work involving members of the general population or other minority ethnic groups that can be used for comparative purposes. This should be a priority for future research. Finally, as this study focused on Indian and Pakistani patients, most of whom emigrated from the Punjab region, this may limit the generalisability of the findings to other South Asians.
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This is the abridged version of an article that was posted on bmj.com on 9 May 2005: http://bmj.com/cgi/doi/10.1136/bmj.38460.642789.E0 We thank all the people who helped with recruitment, the patients who took part, and the members of our advisory group. We also thank Margaret MacPhee and Ruth Scott for excellent secretarial support.
Contributors: See bmj.com
Funding: This study was funded by the Chief Scientist Office, Scottish Executive Health Department. The funder played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the paper; or in the decision to submit the paper for publication. The views expressed in the paper are those of the authors.
Competing interests: None declared.
Ethical approval: Lothian Research Ethics Committee. Ref: LREC/2001/3/20.
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