Alternative treatments such as herbal remedies are commonly used by patients from southern Africa in London, but imbalanced power relationships discourage discussion of their use with clinicians, researchers report in the online edition of Social Science and Medicine.
Felicity Thomas and colleagues conducted in-depth qualitative research with HIV-positive migrants from Zimbabwe, Zambia and South Africa living in London. A total of 70 people took part in eleven focus group discussions and a further 20 individuals were each interviewed twice.
The majority of participants expressed faith in antiretroviral medication, as well as trust and respect for their HIV clinicians.
Nonetheless, the use of non-biomedical treatments was commonly described. These treatments included herbs sent by traditional healers in Africa, herbal medicines bought at African markets in London, remedies thought to boost immunity, substances purported to increase sex drive, and nutritional supplements such as Mariandina (which has sometimes been claimed to cure AIDS).
Just under half the participants had used a non-biomedical treatment and three-quarters said they would be interested in using one in combination with antiretroviral medication or as an alternative to it.
Few people fully disclosed their use of such treatments to their HIV clinicians. This was sometimes because doctors had not raised the subject, but participants generally believed that the use of such treatments would be frowned upon by clinicians, and would open the patient up to shame, embarrassment and rebuke.
Many participants placed considerable faith in alternative treatments, but didn’t usually feel that it was worth broaching the subject with their doctors. One woman commented:
”I thought they wouldn’t understand why I wanted to use the herbs, what I was going to use them for. So that’s why I didn’t tell them.”
Some participants regretted the lack of research conducted on African treatments, and contrasted this with more thorough investigation of Chinese medicine. They felt that the lack of studies led to doctors having ill-informed preconceptions about the safety and utility of treatments.
Some participants who did discuss alternative treatments with their doctor were at pains to go armed with as much evidence of efficacy as possible. There was sometimes a perception that treatments in tablet or bottle form would be taken more seriously by clinicians than raw or semi-processed herbs.
Sometimes, participants did not feel it was relevant to discuss the use of a ‘natural’ product. Moreover, some products were not perceived to be relevant to ‘health’ but thought to affect other aspects of a person’s well-being such as fertility or sexuality, so were not discussed either.
The researchers note that there is a potential for interactions between the active ingredients in such treatments and antiretroviral medications. Moreover the treatments may lead to vomiting or diarrhoea, which can also affect levels of antiretrovirals in the body.
Some participants were suspicious of biomedicine and the pharmaceutical industry, and expressed belief in conspiracy theories as to the origin of HIV. This was especially common in participants from South Africa, a country where health issues have been associated with apartheid, exploitation and exclusion.
Concern was expressed that migrants in the UK, especially asylum seekers, were relatively powerless in the face of doctors. One man said:
“Some doctors don’t listen. The patient will tell them this is how I am feeling, can I change the regime and they will say ‘no, no, no’ and they will insist that you stay on that. Now if that person goes home a lot of things are going on in their heads. They think; I am telling my doctor but he is not listening to what I am saying. Maybe that person is an asylum seeker so he can’t stand and fight with the doctor. So, what he will do is maybe he will stop [the treatment] or maybe start looking for alternatives. But meanwhile, when they go to the hospital they will keep quiet and the hospital will keep recording false data because that person is not taking the medication.”
More generally, many participants commented on factors which limited their communication with clinicians. There was a sense that doctors had more important things to do than respond to patients’ questions. Moreover, when doctors did respond, they used complex medical terminology. One man commented:
”There was a language that they were speaking that I didn’t understand – the viral load, CD4 count – these were things that they could understand but I couldn’t understand… I’ve had a choice [about treatment] but to be quite honest it’s quite difficult to make the choices because the language that is spoken with the treatment is a new language.”
Felicity Thomas notes that current health policy encourages empowered and ‘expert’ patients to take control of their own healthcare. However, at the same time, the non-bio-medical treatments that some patients favour are viewed as illogical, deviant and requiring medical supervision.
As a consequence, patient’s actions (especially those discussed in public) are “constrained by the need to be seen by doctors and other people in their community to be acting ‘responsibly’ and adhering to the scientifically advanced treatment opportunities afforded by western biomedicine.”
A number of participants in the study sought ways to circumvent the monopoly of biomedical approaches, but did so surreptitiously.
The authors observe that understandings of what constitutes ‘reputable medical knowledge’ or of the legitimacy of a treatment can influence the information that patients choose to share with - or conceal from - their doctors.
They conclude that healthcare providers need “to more openly acknowledge the wide array of treatments that exist outside of the parameters of biomedical science, to recognise not only their limitations, but also their potential physiological and psychological benefits to individual users, and to proactively seek to ensure that patients are provided with opportunities, and feel able, to discuss their use of such treatments without fear of criticism or rebuke.”
Thomas F et al. ‘Experts’, ‘partners’ and ‘fools’: Exploring agency in HIV treatment seeking among African migrants in London. Soc Sci Med, published online ahead of print.