An analysis of focus group discussions and in-depth interviews in Malawi, South Africa, Tanzania, Kenya, and Zimbabwe has shed further light on what may encourage and deter people from using HIV self-testing kits.
From 2016, the World Health Organization has recommended HIV self-testing as a way to increase testing among people at a higher risk of HIV. However, the majority of HIV self-testing in Africa is currently being implemented by international programmes such as the HIV Self-Testing Africa initiative (STAR Africa). Most African countries have yet to introduce the new technology on a national scale due to a number of reservations relating to a lack regulation, the quality of self-test kits, ethical and human right concerns, and knowledge gaps among potential users.
To provide insight into what potential and current testers and those working in the HIV response in the region think about HIV self-testing, researchers analysed nine studies conducted in the region between 2011 and 2017. The studies featured in-depth interviews and focus group discussions with a total of 400 key stakeholders.
Potential self-testers noted that it could decrease the stigma associated with HIV testing, which is critical for encouraging self-testing uptake. They also noted that it was convenient, gave testers autonomy over when they tested, and that the tests could be conducted privately – thereby avoiding facility-based barriers such as a lack confidentially and the cost of travelling to clinics.
HIV experts, policy-makers and healthcare providers said the availability of HIV self-testing kits would increase the uptake of HIV testing, enable repeat testing, identify first-time testers and enable early diagnosis. Many felt it could also promote people taking a more active role in managing their health.
Some felt that self-testing might also provide an opportunity for couples to talk openly before self-testing. They believed this face-to-face communication could help partners to share an HIV-positive status, and had the potential to reduce gender-based violence.
The fact that people would not to be able to afford HIV self-testing kits surfaced in all studies as a major reason as to why people might not self-test. Most participants felt that HIV self-testing should be free of charge, supported through government subsidies, in the same way that conventional HIV testing is. Some participants did indicate that they were willing to pay for self-testing kits, but only if they were ensured of privacy.
Fear and anxiety of receiving a positive test result was a common theme among potential users that discouraged self-testing. Many potential users also expressed the view that self-testing kits may not give an accurate result. Previous experiences with fake medical equipment, or the low quality of self-test kits and false advertisements, were a major concern.
Echoing this, HIV experts, policy-makers and healthcare providers felt the lack of effective regulation might jeopardise the uptake of HIV self-testing. Most agreed that regulatory and quality assurance frameworks would be essential to encourage people to use the new technology.
Most self-testers expressed a preference for oral fluid-based HIV self-testing above blood-based finger stick HIV self-testing. They described oral-based kits as easy to use, citing this as something that would encourage uptake. However, some current self-testers reported confusion on how to use the kits due to a lack of clear instructions.
Various participants cited a fear of misinterpreting test results when testing as a reason not to use a self-testing kit. Other participants were concerned that low literacy levels, particularly among people in rural areas, might prevent people from being able to use self-testing kits correctly or discourage them from trying the kits at all.
Linked to this was a concern about the lack of face-to-face counselling in relation to HIV self-testing. Many participants viewed counselling as an essential part of HIV testing, which when missing might increase negative psychological outcomes, including suicidal thoughts, or lead to adverse reactions from a partner, if a self-test returned a positive result.
HIV experts, policy-makers and healthcare providers generally agreed that linkage to HIV care and treatment should be an important component of any HIV self-testing programme and inextricably linked to counselling.
These findings highlight the wide and complex array of factors that may enable and deter people from HIV self-testing. It has important implications for future studies that aim to assess the feasibility of HIV self-testing in the region, and also provides valuable information for those developing self-testing policies and evaluating current self-testing programmes.