Qualitative research suggests that some of the barriers to antiretroviral adherence for black African and black Caribbean people are culturally specific, while other barriers common to many other people with HIV – such as stigma – play out in specific ways in these communities. The research was presented to the British HIV Association conference in Manchester last week, alongside other presentations drawing attention to issues of faith-based ‘healing’ in UK African communities.
As part of the development of an intervention to support adherence, in-depth qualitative interviews were conducted with 52 adults taking antiretroviral therapy (ART) at the Homerton and King’s College hospitals in London. The majority of participants were black African, while seven were black Caribbean. Thirty-seven were women, fifteen were men.
Barriers to taking therapy were grouped into themes.
In terms of physical health, some participants associated treatment, rather than HIV itself, with the experience of being ill.
“It didn’t make sense that I’m not sick. It’s like, okay if you have headache you say let me take paracetamol to make the headache stop isn’t it? But you don’t have symptoms, you are not sick from it and you are told ‘take medication’. I don’t have a headache and they are giving me medication to stop the headache.” (40 year-old Zimbabwean female.)
Treatment side-effects were sometimes thought to reduce quality of life.
“Your main worry is not about my life has been cut short, no. It’s now about the quality of life you are leading in terms of medication all the time so it’s a catch 22. Do you lead a long life which you’re not happy with or do you lead a short quality of life?” (45 year-old Zambian male.)
Instead of integrating treatment into their everyday lives, some individuals felt that they had to restructure their life around ART, consequently losing their autonomy. Moreover, some felt that they had lost their independence because their health depended on doctors.
“They don’t agree, doctors always want a proof and to convince a doctor, you are a layman, you can’t. But you are person, the actual person who feels it. You know this medication we take it has got so many disadvantage and advantages.” (54 year-old Zambian male.)
In terms of psychological wellbeing, antiretroviral therapy was a constant reminder of HIV status. This woman said that her HIV diagnosis felt like a death sentence, but treatment did not appear to help her accept it:
“At the end of the day, what’s the use, what’s the point of using it, the medication, because you’re going to die. It’s not curable, something will happen. It was a lot to cope with, with the scare, the futility.” (40 year-old Nigerian female.)
Other people were so overwhelmed by their HIV diagnosis that they could not give attention to HIV treatment.
“They will just be talking to you… You’ll just be sitting there are they are talking to you but when you leave they’ll know everything’s gone. Yes, just passing through into your ears and out on top of your head.” (41 year-old Ugandan female.)
Concerns about HIV medication leading to unwanted disclosure of HIV status were expressed by most study participants.
“I’ve had a friend come around say oh what are you doing with all these big, big, big, big tablets, what’s wrong with you? Because it seems to be the kind of tablet for a big problem.” (40 year-old Nigerian female.)
The consequences of unwanted disclosure could be catastrophic – social rejection, ostracisation, withdrawal of financial support, loss of shelter. The authors say that in these circumstances, patients felt they had a clear rationale for non-adherence. The risk of clinical consequences had to be balanced with the social consequences of disclosure.
“I don’t have a house, so I was sleeping with friends. Sometimes when they were in the house, I can’t take the medication because maybe they will start talking about me and maybe they would refuse me sleeping in their house.” (37 year-old Nigerian female.)
Finally, in terms of spirituality and religious beliefs, some participants believed that only God could dictate one’s life course, with medicine having no effect.
“You are just human beings, you are doctors, you are all created by God… You cannot say when I will die, you can’t because you did not create me, it is God that created me and He is the one who will say when I will die.” (29 year-old Nigerian female.)
People who held these beliefs frequently reported miraculous healing beliefs. They were often non-adherent but did not reject the offer of antiretroviral therapy outright.
And some participants saw treatment as a tool from God. Taking the tablets was an individual responsibility, in order to enact God’s will.
“God can do the miracle, he is the only one that can do the thing that is not possible. But for you to get that, take your medication to get God’s help, because if you don’t help you, God can’t help you. You have to do the effort, you take the tablet, you trust God.” (42 year-old Ivorian female.)
Two further poster presentations drew attention to claims of faith-based ‘healing’ and alternative medical beliefs. The posters do not suggest that these are problems affecting very large numbers of people, but that when they occur, the consequences can be extremely serious.
A survey of 14 community organisations linked to the African Health Policy Network (AHPN) found that seven were aware of cases of people being told that they were ‘healed’ and pressured to stop taking medication by faith leaders. At least 15 specific cases were identified – one organisation was aware of the situation affecting five different individuals. Another organisation said that one of their clients had deteriorated mentally and is now in a care home; another has recently restarted treatment.
Organisations also said that it was challenging to deal with these cases, as individuals were wary of discussing beliefs that were likely to be dismissed by clinicians and HIV community organisations. Individuals are also reluctant to identify the churches and pastors involved.
AHPN is also in the process of conducting qualitative interviews with people who have experience of the phenomenon. One man who had disclosed his HIV status in church described what happened to him.
“The church I went to was very persuasive, a charismatic church. You are told to come to the front and they will pray for you, and then they tell you you’re healed… They prayed for me and told me I was healed, but all the time I was getting bad. They told not to take my medication. You go to the church and you think that the pastor has all the power.”
For the final poster, clinicians from Manchester reviewed clinic notes from the past decade and identified nine patients who had disengaged with antiretroviral therapy because of beliefs that are inconsistent with conventional medical thinking. Some beliefs were spiritual or religious (five cases), while others were about alternative therapies (three cases) or a pharmaceutical industry conspiracy (one case).
Moreover, the issue was not limited to African communities – the nine cases were in three white men, one black African man and five black African women.
Most patients had been diagnosed since 2005 and had previously been on therapy. Whereas the median highest CD4 count (when on treatment) was 509, the median lowest CD4 count while off treatment was 49. All patients had AIDS-defining illnesses after stopping therapy, including HIV encephalopathy, CMV retinitis, cryptococcal meningitis and cerebral toxoplasmosis.
Significant clinical resources were required to deal with these morbidities and to encourage patients to re-engage. Adherence nurses, psychologists and psychiatrists were heavily involved, with numerous multidisciplinary meetings.
At present, four patients are back on therapy, three are not, one has been lost to follow-up, and one individual has died.
Poliquin E et al. What are the barriers to antiretroviral adherence in people from UK Black African and Black Caribbean communities? A qualitative study. 19th British HIV Association conference, Manchester, abstract P164, April 2013.
Johnson L et al. Effect of antiretroviral treatment non-engagement due to beliefs inconsistent with conventional medical knowledge. 19th British HIV Association conference, Manchester, abstract P18, April 2013.
Stevenson J & Browne D The impact of faith-based ‘healing’ and ‘cure’ claims on Africans living with HIV in the UK. 19th British HIV Association conference, Manchester, abstract P13, April 2013.