While policy makers may have decided that HIV treatment should be offered without delay to everyone who tests HIV positive, individual patients may have other priorities and may need time before committing to antiretroviral therapy (ART), Dr Shona Horter of the London School of Hygiene and Tropical Medicine and colleagues warn in Medical Anthropology and in two other recently published articles.
“Individuals’ experience in coming to terms with an HIV diagnosis and deciding when to start ART is complex,” Horter says. “However, this is not necessarily accounted for within the biomedical gaze, with unilinear metrics measuring Treat-all implementation success requiring almost all those diagnosed HIV positive to initiate treatment within a short timeframe.”
The findings come from a qualitative study from eSwatini (formerly Swaziland), the small southern African country that has the highest HIV prevalence in the world. The scale-up of HIV treatment in eSwatini has been impressive, despite the country’s poverty and rural, mountainous geography.
In 2014, Medecins Sans Frontieres and the Ministry of Health launched a treat-all pilot study in the Shiselweni region, prior to national roll-out. In the programme, prompt initiation on ART was offered on the same day that a person enrolled in HIV care, regardless of CD4 cell count. Around half the patients did start on the same day, with most others deferring for a week or two.
For the qualitative study, 29 people living with HIV in Shiselweni took part in a total of 86 in-depth interviews. Most people were interviewed three times over around ten months, allowing for rapport to develop with the interviewer and for changes over time to be reflected. Interviewees were all enrolled in HIV care without any symptoms and with a CD4 cell count above 500 (i.e. were only eligible for treatment because of the treat-all policy). The researchers also interviewed healthcare workers and observed interactions in clinics.
In 2015, the World Health Organization (WHO) recommended a comparable treat-all policy, which was implemented nationally in eSwatini the following year.
The researchers present the case study of Zandile, a 26-year-old ambitious woman who was training to be a teacher. She described herself as being Christian and ‘well behaved’, with her diagnosis during pregnancy coming as a profound shock.
“I felt like the hair on my head is coming off… and as though I would get into a hole and the earth just curves in.”
She was told that if she did not take treatment her child would be HIV positive and was asked to start treatment the same day.
“The nurse gave me the pills… I was scared… and she said, “if you start them you start for the rest of your life,” and then I got so nervous… really, I felt like I was dying and being buried at that time. They gave me huge containers of pills… and I was carrying a mini bag, it’s too small to put everything inside, and people will be looking at me, you see that when you are taking treatment people are looking at you, really, I was very low.”
The authors note that although the practice of HIV testing and starting treatment may be routine for healthcare workers, the event may feel cataclysmic to the individual. Zandile did not actually take the pills that day but hid them in a bush near her home for three weeks.
Meanwhile, she underwent a process of thinking and seeking information. She spoke to her boyfriend, who advised her to re-test elsewhere to check her result. Hoping that she might still be HIV negative, she continued without treatment. She sought out information on the internet and listened carefully to programmes about HIV on the radio. These sources presented treatment in positive terms.
She contacted a pastor, hoping that he would be able to heal her. However, his advice was different:
“The pastor said “do everything they say at the hospital, we will pray for you.” I said, “so should I take the treatment?” and he said “take them.” And that is when I started taking the treatment, I started that way.”
Zandile was interviewed three times, over nine months. In her first interview she appeared to carry a lot of self-blame and shame. By the time of her last interview, she talked about how she had started to accept her situation. She did not want HIV to have too much influence on her sense of self:
“I do not take note of it, I do not give myself time to think that I am positive. When I get angry, I do not then have pity and think “oh, because I am positive… ” I just don’t think about it and dwell on it, it is just something I have put on its own shelf.”
The researchers describe this process of a person coming to terms with their diagnosis and changes to their sense of self as ‘identity work’. Many people need time for this before they are ready to start treatment, they say.
Some individuals engaged with HIV testing services having already begun the journey to treatment readiness. Celiwe was 19 years old, educated to primary school level and working in a textile factory. She was encouraged by her mother to seek health care having experienced health problems (stomach aches, diarrhoea, weakness and weight loss). Moreover she had reflected on past experiences and was conscious of her vulnerability to HIV:
“When you are doing bad things, you don’t think of the risk, like when I was in [city] living that life I never thought of it. But when I was sick with stomach ache, it then came back to me that in [city] I was living that life and not even protecting myself, and that is when it dawned on me that it could happen that I too am like this. That is what made it easy for me to test and further accept the treatment.”
Also facilitating her choice to start treatment – one week after diagnosis – was a family member who was living a “normal” life with HIV and ART. Healthcare workers gave her the space to make her own decision and told her that it was up to her if she wanted to start treatment or not.
The fear of falling ill particularly motivated Celiwe to start treatment:
“I am scared that I will become too sick maybe… I think it is better than for me to end up dying and my children are left alone. So it is better for me to take them… If I do not start them and I fall sick and die, who will take care of my child?”
For some others, taking treatment was a way to avoid signs or symptoms of illness that could expose their HIV status from developing. This was often more about avoiding disclosure of HIV status than about maintaining good health itself. Remaining healthy, strong and energetic was often particularly important for men, enabling them to uphold ideas of masculine responsibility and productivity. As Mandla, a 36-year-old man explained:
“When I’m healthy, my family will have something to eat and my children will be able to go to school and they wouldn’t have problems… if I might get sick then I think my children will struggle because what they get from me it’s something they cannot get from anyone [else]”.
Improved health after starting treatment encouraged him to continue with it:
“It is helping… because most of the time before I started taking the treatment I would feel that my body is going down, like when you wake up you’d find that the body is very tired most of the time. But then since I started the treatment I feel much better and healthier, and my body is energetic.”
Although HIV treatment was understood to preserve health and avoid symptoms, he was one of the interviewees who had concerns about HIV treatment side effects (such as changes in weight, hair and skin colour) potentially revealing his HIV status.
“Once I gain weight they are going to say I have started taking the treatment… I was really afraid that people were now going to identify me easily.”
Some interviewees described being coerced to test for HIV and to start treatment, which could undermine their engagement with care. The healthcare workers who initiated Nobuhle onto ART at the age of 17 appeared to be driven by ideas of patient compliance rather than patient choice.
“They did not ask me, they told me that I will start them [ART] because I am pregnant … They told me that when you are pregnant … whether you like it or not you take the treatment because they say when a baby is found to be positive, you will be arrested.”
She did not believe her diagnosis or that treatment was needed, as she felt she was too young to have HIV and was in good health. Taking the medication also increased the risk of her boyfriend believing that she had HIV. Moreover, the experience of stopping treatment after giving birth did not convince her that it was needed.
“There was a time… when I would think “how this thing is not doing anything to me” and then I stopped taking them and there was no sign of it being there… I never used to take them... I was not taking them well and nothing would happen and it would be the same as when I was taking them.”
Almost all interviewees wanted to see the difference that treatment was making to their health. The researchers suggest that viral load monitoring and sharing the results with patients could help instil a belief in the effectiveness of treatment and motivate ongoing treatment-taking, especially for people who did not have symptoms before starting treatment.
However, by the time of the third interview Nobuhle had re-engaged with treatment, re-testing and starting afresh at a different clinic. A fear of future illness and the experience of some health problems influenced her decision:
“Instead of recovering, I kept on losing more weight. Only to find that even the CD4 count was less, from what it was, they had dropped drastically… I feel like I am ready now.”
“Greater understanding of the challenges patients can face coming to terms with an HIV diagnosis, starting and continuing on ART, and the challenges healthcare workers can face in supporting patients on this journey, will hopefully enable an environment conducive toward supportive practitioner-patient relationships and service delivery tailored to individuals’ needs,” say Horter and colleagues.
Horter S et al. Dissonance of Choice: Biomedical and Lived Perspectives on HIV Treatment-Taking. Medical Anthropology, online ahead of print, February 2020 (open access).
Horter S et al. “Is it making any difference?” A qualitative study examining the treatment‐taking experiences of asymptomatic people living with HIV in the context of Treat‐all in Eswatini. Journal of the International AIDS Society, 22: e25220, January 2019 (open access).
Horter S et al. “I don’t want them to know”: how stigma creates dilemmas for engagement with Treat-all HIV care for people living with HIV in Eswatini. African Journal of AIDS Research, 18: 27-37, 2019 (open access).
Full image credit: People listening to the health promoter at the 'Cow head' meeting, Shiselweni region. The 'Cow head' meeting is a traditional space of discussion for the community. MSF includes this event in its strategy to reach population in far away villages and discuss topics around HIV and TB. They also provide testing and counselling. At the end of the meeting, people share a meal, a cooked cow head provided by MSF.