A study amongst 2443 people in Zambia, recruited from HIV clinics and community organisations, found that social ostracism, rejection by sexual partners and fear of not being able to handle antiretroviral therapy (ART) were the reasons people most often gave for not testing for HIV. A session at the 19th International AIDS Conference (AIDS 2012) in Washington heard that, perhaps surprisingly, in terms of demographic characteristics, people living in cities were far less likely to test than people in rural areas. Unmarried people and men were also less likely to test, as were people who did not belong to community associations or attend church.
Religious beliefs, on the other hand, were the second most common reason people gave for not taking ART if they did test, the most common being that they felt healthy. In demographic terms, the characteristic most strongly associated with failing to take ART when it was indicated was a belief in traditional medicine.
The study was a mixed qualitative/quantitative survey and consisted of two groups of people: 1764 people sampled at random from local communities and another 551 people known to have HIV who attended HIV clinics. Sixty per cent of those questioned were women and 59% married; 50% lived in urban areas and 80% were employed. While the majority were in the 25 to 40 age group, 13% were under 25 and 16% were over 55.
In the random community sample, 1231 (70%) had ever taken an HIV test and 238 (13.5%) were HIV positive, of whom 164 (9.3%, or 69% of those with HIV) were on ART. HIV prevalence in this survey reflects previous estimates of national prevalence, but a far higher proportion of people had tested than UNAIDS estimates, which cite testing rates of 35% in women and 20% in men. Another impetus behind the survey was that loss to follow-up in Zambian ART programmes is as high as 33% and researchers wanted to find out why people dropped out of treatment.
In the qualitative part of the survey, people both tested and untested were asked to agree or disagree with a number of reasons to test or not to test, and the HIV-positive ones, whether they were on ART or not, with a number of reasons to take or not take treatment.
Reasons people don’t test
The reason most often ticked by people for not taking a test was that "people would gossip about me" (64% of people said they were worried about this). Other social reasons given were: “I’d be rejected by sexual partners” (54%); “My spouse would divorce me” (53%); “No-one would marry me” (51%); “My family’s reputation would suffer” (45%); “I would lose friends” (43%). A third of women believed they would not be able to have children.
Other reasons related to the medication: “I wouldn’t be able to adhere to it” (59%); “The treatment is lifelong” (57%); and “I’m worried about side effects” (44%).
In the quantitative part of the survey, in multivariate analysis the characteristic most associated with not having taken a test was living in an urban area. People living in a city were 2.45 times more likely not to have taken a test than people in rural areas. This, which on the face of it seems a surprising finding, may relate to cities containing more young people and seasonal labourers, or to there being more isolation and anonymity in cities. Either way, it bears out the underlying hypothesis of the researchers, which is that the less cohesive societies are, the less likely people are to test.
Unmarried people were 2.27 times more likely not to have tested, which again could relate to youth, to isolation, or to both. Men were 53% less likely to have tested, people who did not attend church 33% less likely, and people not involved in any community activity 31% less likely. The fact that people who believed that their neighbours did not get along with each other or were unwilling to help each other were also 24% less likely to have taken a test may confirm that social isolation or pre-existing stigma, emotional problems or lack of social capital may discourage people from testing.
Reasons people don’t take treatment
In terms of treatment, reasons not to take ART sorted themselves into two groups: belief systems and matters of structure and supply, such as availability. The belief systems were much more powerful deterrents to people than the practical barriers.
Belief-based reasons not to take ART included “I feel healthy” (44% – actual health indicators like CD4 count were not collected by the survey); “I pray to God for my health” (26%); “I take traditional medicines” (17%); “I don’t believe my test result” (16%); and “I don’t believe ARVs work” (13%).
Structural reasons included “I have no family support” (17%); “I can’t afford treatment” (16%); “The drug supply is not sustainable” (14%); “The clinic is too far away” (13%); and “ARVs are not available in my area” (9%).
In multivariate analysis, the strongest demographic characteristic associated with not taking treatment was belief in traditional medicine or in conspiracy theories about ARVs, which made people 2.43 times less likely to take treatment. No other factor was anything like as strongly associated, but distrust on one’s spouse or family was associated with a 35% reduction in the likelihood of taking treatment, and tolerance of domestic violence with a similar reduction. People who were widowed or divorced were actually twice as likely as average to take treatment, but this could be an age-related variable.
In general, presenter Sara Gari commented, “Less cohesive communities put people at risk of not accessing HIV services” and that “family trust plays an important role in supporting people to take treatment.”
Gari S et al. The critical role of social cohesion on uptake of HIV testing and ART in Zambia. 19th International AIDS Conference, abstract TUAC0105, Washington DC, 2012.