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The detection of hypertension in black Caribbean populations is good, but its control is thought to be inadequate.
To explore how black Caribbean patients with hypertension understand their condition, and the strategies they use in managing hypertension.
Qualitative study using in-depth interviews.
One general practice in inner-city London.
Practice records were searched to identify black Caribbean patients with known and treated hypertension. Audiotaped in-depth interviews were conducted with all identified patients and transcripts of the interviews were analysed for thematic content.
We interviewed 19 black Caribbean patients with hypertension. Participants reported physical symptoms for elevated blood pressure; a minority relied on symptoms to determine their medicine use. A majority of participants equated ‘normal’ blood pressure readings with being cured and with no need for prescribed medicine. All participants had been prescribed antihypertension medication, and seven reported taking medication as prescribed. Those who did not, reported diverse and dynamic patterns of medication consumption. Some who had achieved normal blood pressure equated this with being cured and stopped medication, resuming when diagnosed with high blood pressure. Some modified their use of tablets according to bodily symptoms that they felt indicated higher or lower blood pressure. Some stopped or reduced medication because of unwanted effects and almost half of the participants used Caribbean ‘bush’ remedies.
These findings suggest that some patients are making reasoned decisions about blood pressure management, drawing on medical information, their own bodily experiences of illness and sociocultural notions and practices. However, this may lead to medication use that diverges from that which is recommended. This study indicates a continued need to address these patients' perspectives and develop and evaluate new strategies to achieve hypertension control in this group.
The detection of hypertension among black Caribbean people is good, but there is some evidence that their ongoing management of it remains poor.1,2 Barriers and facilitators to hypertension control are not well understood, although research with black Caribbean people with hypertension conducted in the 1980s suggested that choosing to ‘leave off’ medication and using traditional remedies were important factors in hypertension management.3 Given the continued poor management of high blood pressure in this group we aimed to revisit the question of how black Caribbean patients with hypertension understand their condition, and the strategies they employ in its management.
We recruited participants at an inner-city London group practice, which had a high concentration of patients from minority ethnic groups. Five GPs worked at the practice, which maintained a hypertension register but did not have a hypertension clinic. We were unable to assess the quality of hypertension care as no audit data were available. We identified patients on the hypertension register who had been diagnosed as having hypertension for more than 1 year to focus on patients who had sufficient experience of managing hypertension.
We purposively sampled patients of black Caribbean ethnicity from practice records and wrote to sampled patients inviting their participation. Open-ended interviews were conducted in participants' homes, using a topic guide based on a review of the literature. Topics included the circumstances of their diagnosis, their experiences of living with hypertension, knowledge of hypertension and its relationship with other conditions, medication use and views on treatment, and other strategies employed in managing hypertension. The first two interviews served as pilot interviews and are included in the data as no substantial changes were made to the topic guide. All interviewees were assured of anonymity in any presentation or publication of the findings. With permission, interviews were audiotaped and fully transcribed for analysis.
Patients experience symptoms of elevated blood pressure and, when making decisions about using antihypertensives, balance reservations about using drugs against the benefits of taking them. Black Caribbean patients may ‘leave off’ prescribed antihypertensive medications in favour of herbal remedies. Participants' understanding of hypertension and its treatment is rooted in beliefs that bodily sensations indicate elevated blood pressure, that the purity of blood can be compromised by pharmaceuticals, as well as biomedical conceptions about hypertension and its treatment. Participants' understanding of ‘normal’ blood pressure is embedded in an understanding of hypertension as an acute condition with ‘flare-ups’ and that equates ‘normal’ with cured; this belief partly informs decisions to discontinue antihypertensive medication use. These beliefs and practices have persisted since previously reported over 16 years ago. Their persistence highlights the strength of these beliefs and indicates a continued need to address these patients' perspectives to achieve concordance and develop and evaluate new strategies to achieve hypertension control in this group.
We used content analysis to identify recurrent themes. Preliminary coding categories were generated then revised and the final categories were agreed. Three transcripts were analysed to compare emerging themes. The coding scheme was expanded and all transcripts were coded, exploring themes from interviewees' accounts.
Of the 428 patients with hypertension, 32 were identified as of black Caribbean ethnicity. Nineteen agreed to participate: six men and 13 women. Fifteen were born in Jamaica, two in the UK of Jamaican parents, one in Guyana and one in Trinidad. Their ages ranged from 40 to 75 years (mean age 62 years). Thirteen patients — five men and eight women — declined to take part or could not be contacted.
Fourteen participants reported that when their blood pressure was high they had symptoms, including pain in the head or chest, dizziness or feeling that their head was spinning. Participants described having had such unexplained symptoms prior to being diagnosed with hypertension and subsequently associated these symptoms with elevated blood pressure. Thus, a pattern for high blood pressure being identified with bodily sensations was established.
A minority of participants (n = 4) relied on having symptoms or an absence of symptoms as an indicator of the need to take tablets or not:
‘Yes, because I feel the headache, then I will take them … I would take it straight off. I would have to take it straightaway because it is much more serious then … I feel that I'm okay and better … so I just ease off for a while…’ (Participant 030.)
Feeling well, with an absence of symptoms, was equated with being well:
‘Well I don't take something [medication], if I'm not sick, I don't take it. Would you take something if you don't feel sick?’ (Participant 029.)
Participants' concepts of ‘high’ and ‘normal’ blood pressure informed the way they understood and managed their condition. Participants who had several measurements of what healthcare professionals described as ‘normal’ blood pressure questioned their doctors about stopping prescribed medication:
‘Well as I said, if you are “normal”, why take the tablets? … You only take it if you know you have it, but if you're normal I don't think it makes sense, I don't.’ (Participant 003.)
These participants equated normal blood pressure with being ‘better’ or cured, and with no need for prescribed medicine. In this context hypertension was seen as a condition with ‘flare-ups’, which only then needed treatment.
Although acknowledging doctors' expertise, participants distinguished between that and their own subjective experiences of health or ill health:
‘We never study our own body but the doctors, that's what they are there for, so we put our faith in them … the body is mine, but the doctor knows about the body more than I.’ (Participant 001.)
These participants reported that they acted on doctors' advice:
‘My doctor make it clear to me “If you don't take the tablets and something happen to you, you know this is bad and this is it.” So this is why I just follow. I believe in him, he knows what he knows.’ (Participant 001.)
One participant, however, rejected his doctor's advice to take prescribed medication. He reported that he had lost faith in his doctor, alleging that the doctor had not informed him about the side effects of his prescribed medication.
All participants were prescribed hypertensive medication, and seven reported taking it as prescribed. Reliance on doctors' advice, and the fact that prescribed drugs were rigorously tested were the main factors influencing their adherence:
‘The tablets I'm taking for the blood pressure, they are well tested and it's important … with the tablets you're sure …’ (Participant 002.)
Nine participants also used what many of them called ‘bush’ remedies. These were Caribbean herbal remedies such as medina, cerasee, banana leaf, breadfruit leaf and green papaya. Participants were reluctant to reveal their use of traditional remedies to health professionals, fearing disapproval.
These participants contrasted prescribed drugs with ‘bush’ remedies. ‘Bush’ was seen as more natural than pharmaceuticals, which ‘added impurities to the blood and body’. ‘Bush’ was also considered good for purifying blood that had been ‘polluted’ by pharmaceuticals, and bitter properties of ‘bush’ were viewed as especially potent:
‘We have a plant, we use the bark, it's very, very bitter … because it's that bitter … bitterness is good to purify the blood.’ (Participant 028.)
Of the nine people who used ‘bush’, eight used it as a remedy to purify the blood rather than as an antihypertensive. Only one participant, who visited a herbalist, used it as an antihypertensive.
‘Bush’ was also seen as more trustworthy than pharmaceuticals by nine participants because it was part of ‘traditional’ healing practices, with apparently beneficial results:
‘We are old fashioned, we grow up with it … In our days, younger coming up, we never have doctor to run to. Your parents boil herbal things and give [them] you. That's why many Jamaicans so [are] bloody strong!’ (Participant 026.)
This trust in ‘bush’ was mediated by generational familiarity with it. For example, one 40-year-old participant, born in the UK, did not use ‘bush’ because, unlike her Caribbean parents who did, she knew nothing of the variety of herbs or their use. Familiarity with ‘bush’ did not necessarily mean it was used, however; its effectiveness was questioned at times. For example, two 60-year-old participants who were familiar with ‘bush’, took prescribed medication only, stating that ‘bush’ use was a practice suitable for the Caribbean but not the UK.
The 12 participants who reported that they did not use antihypertensives as directed made different decisions about how to use their medication, with various patterns of consumption evident (Box 1). Reasons for decisions about medication use included a lack of symptoms or diagnoses of ‘normal’ blood pressure, experiencing medication side-effects, and fearing impurities or harmful long-term or side-effects from prescribed medication.
Participants described how their decisions about medication use varied over time. Two participants reported that they occasionally forgot to take medication, or left it at home when they went out and were therefore unable to take it as prescribed. Other participants gave examples of adopting ‘routinised’ strategies and cues to ensure they took their medicines.
Black Caribbean patients' reasoned and varied use of prescribed medication and/or traditional herbal remedies was influenced by several factors, including biomedical conceptions, faith in the effectiveness of treatments, beliefs about bodily sensations indicating illness, a belief that hypertension can be cured and concerns that the purity of blood can be compromised by pharmaceuticals.
This study explored how a sample of black Caribbean patients with hypertension understood their condition and the strategies they employed in managing it. The qualitative exploration allows an understanding of patients' perspectives and contributes to an understanding of why treatment may fail in this group.
A limitation of the study may be that we only sampled from one primary care practice. The number of participants obtained from the single practice was, however, considered adequate to fulfil the aim of the study as well as being appropriate for the qualitative method. With a mean age of 62 years, the sample also mainly comprised migrants. Their understandings were partly informed by their experiences in the Caribbean, mainly Jamaica. These understandings may reflect the experience of similar groups of black Caribbean people; the influence of popular concepts from the Caribbean may decrease in younger generations of this minority ethnic group, whose experiences may be shaped more by experiences in the UK.
Belief in the physical experience of hypertension has been reported previously.3,4 This experience of hypertension as a disorder with symptoms is at odds with the medical definition of hypertension as asymptomatic.5,6
This study also found a divergence between participants' and professionals' understandings of ‘normal’ blood pressure, with participants equating it with ‘cured’. This highlights the importance of patient–physician communication for patient behaviour. Patients stopping prescribed medication for hypertension in response to perceptions of ‘normal’ blood pressure levels has been previously described.7,8 Physician feedback indicating that patients had ‘normal’ blood pressure levels informed patients' evaluations of the need for prescribed medication and caused them to modify or stop medication.7 This is also seen in an analysis of reasons for non-adherence, where patients' assumptions of ‘normal’ blood pressure resulted in their stopping prescribed treatment.8
Studies looking at reasons for adherence or non-adherence distinguish between purposeful actions involving conscious decisions to take or not take medications and unintentional actions related to practicalities of medication taking, such as remembering to take it or not.6,7,9 Very few black Caribbean patients in a previous study forgot to take their medicines.3 Similarly, in this study only two participants occasionally forgot to take their prescribed medication. The findings reveal diverse patterns of medication consumption illustrating participants' purposeful responses to prescribed treatment.
The study also showed changes over time in the ways that participants managed hypertension. The processes that inform the diverse and dynamic pattern of medication consumption involve participants comparing medical expertise with other ‘expertise’ derived from physical experiences and traditional beliefs about illness and trusted traditional treatments. Some participants, for example, believed that pharmaceuticals contaminate the blood, which therefore needs to be purified. This confirms similar beliefs and practices reported in previous studies in the Caribbean,10,11 the US11 and the UK.12
There have been changes over time in the way in which traditional herbal remedies are thought to function in the case of hypertension. Patients in an earlier study viewed traditional herbal remedies as both blood purifiers and remedies for controlling blood pressure.13 This contrasts with the findings in this study where all participants who used herbs believed that they were blood purifiers, except the one who regularly consulted a Caribbean herbalist and used ‘bush’ remedies to control his blood pressure. In this changing pattern of medicine consumption, prescribed medications and traditional remedies are perceived to perform different functions, which may be complementary.
This study demonstrates the persistence of beliefs that inform variable patterns of hypertension management, first reported in black Caribbean people in the UK over 16 years ago.3 The persistence of these patient beliefs and practices over a period characterised by significant advances in education, detection and treatment of hypertension highlights the strength of these beliefs, which may lead to medication use that diverges from that which is recommended. This indicates a sustained need for healthcare professionals to address these beliefs and practices in advice to patients. This includes a continuing need to convey to patients that although people with hypertension may experience physical symptoms of their condition, unlike blood pressure measurement, symptoms are not a reliable indicator of elevated blood pressure.
There is also a need for greater clarity on the meaning of ‘normal’ blood pressure. Describing blood pressure as ‘controlled’ would perhaps convey health professionals' meanings more accurately to patients; health professionals should also continue to emphasise that there is a strong risk of blood pressure becoming uncontrolled if not well managed.
These findings also confirm previous advice for healthcare professionals to incorporate patients' perceptions of illness and treatment in non-judgemental discussions about treatment plans.14 Discussions between patients and healthcare providers, which address patient doubts about treatment (for example),4,8,15 would better inform patients' decision making and health behaviour.16 This is especially important because, as this study indicates, these participants' medication consumption is more affected by purposeful decision making about treatment than practicalities of medicine taking.
The diversity in patient medication use indicates that dichotomous categorisations of patients as simply adherent or non-adherent do not reflect the complexity and dynamism of patient behaviour. This suggests that discussions between health professionals and patients need to be tailored to individual cases to avoid generalisations and stereotyping when developing treatment plans.17 The findings also suggest a need to develop and evaluate new strategies to achieve hypertension control in this group.
We thank the patients of the general practice for participating in the study, and the practice staff for their support in conducting the study.
This study was funded by a grant from The Stroke Association (TSA PROG 1). Dr Christopher McKevitt is funded by a Department of Health Career Scientist Fellowship
Ethical approval was gained from St Thomas' Hospital Research Ethics Committee (EC03/086)