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
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.)