A service offering kits for HIV self-testing in South Africa has the potential to improve uptake of HIV testing by individuals who fear breaches of confidentiality or who do not trust healthcare workers, according to a qualitative study published in PLoS ONE. But other, long-standing barriers to accessing HIV testing are likely to remain pertinent – individuals who do not feel ‘ready’ to know their status, who worry about HIV-related stigma or who fear dying of AIDS will probably still be reluctant to test.
While self-testing is not prohibited in South Africa and the OraQuick In-Home HIV Test is available, influential stakeholders have warned against self-testing. Concerns include the lack of counselling, the challenge of ensuring linkage to care, the potential for coercive use of self-testing devices, and their accuracy. The 2015 national guidelines state that “HIV self-testing is currently not recommended and supported in South Africa”.
Researchers from Médecins Sans Frontières (MSF) wanted to better understand whether HIV self-testing could help more people to know their HIV status. Although HIV testing is offered to all patients at MSF health facilities in the Khayelitsha informal settlement near Cape Town, only 30% accept.
In-depth interviews and focus group discussions were conducted with nine individuals (mostly men) who had declined HIV testing as well as seven female healthcare workers (nurses, counsellors, community caregivers). In addition, two individuals who had accepted testing were interviewed alongside their sexual partners. The OraQuick device was demonstrated during interviews and focus groups.
MSF have used the findings to inform a pilot intervention offering self-testing in Khayelitsha.
In line with previous research, respondents shared the perception that the OraQuick device is easy to use, provides an alternative for people concerned about intimacy and confidentiality, and gives individuals control of when and where to test.
A 20-year old man said:
“It’s better because you can take this and go home. Nobody sees your results. Only you know. I prefer that it’s confidential. I know that I do have HIV but nobody saw me, it’s me alone. Now it’s my duty to go there and take the ARVs.”
Men and young people were thought to be particularly likely to benefit from a provision of HIV testing away from health facilities – spaces associated with women’s health-seeking behaviour.
“They [men] don’t even wanna go to the private clinic, mobile clinic... If you give this test, they take it and do it to themselves, it is gonna be much easy for them.”
However the research identified many barriers to HIV testing which the provision of self-testing kits would be unlikely to overcome. Many individuals who might suspect that they have HIV were described as being ‘not ready’ for testing.
“There are people who are still treating people who are diagnosed [with AIDS] as outcasts from the community. That’s why you find out that some people are still afraid to know their status, and some of them are not aware that if you are HIV-positive you still are as healthy as everyone if you are taking the ART. . . once there is somebody who is diagnosed with HIV, the only think that clicks in somebody’s mind is that ‘I am going to die’.”
Social pressures on men to conform to a public image of masculinity were described. Men are expected to provide for their families, to be able to bear life’s adversities and only attend clinics when sick.
Respondents tended to distinguish between the acceptability of the device and actual uptake of self-testing. If an individual was not convinced of the importance of knowing his or her status, self-testing would still not be used.
Respondents also raised concerns about some possible disadvantages of self-testing. In line with the everyday dominance of men over women in the community, men may coerce their female partners into testing. Discordant results within a couple might result in arguments or violence – especially if they had not received any counselling. People getting reactive results might be unlikely to seek confirmatory tests or link themselves to medical care. People getting negative results might be sexually disinhibited:
“You want to celebrate! … You feel released and throw the condom away!”
The healthcare workers who took part in the study were especially likely to have concerns about potential harms. Some suggested that kits should only be provided to individuals who could demonstrate that they fully understood the procedures involved and who would be ready to attend post-test counselling. However the researchers comment that too much contact with health workers or follow-up could remove one of the perceived benefits of self-testing.
The study has informed a pilot intervention at Médecins Sans Frontières' facility in Khayelitsha. Individuals who decline HIV testing in the clinic will be offered a self-testing kit to take away. Rather than simply make the kits available, their use will be introduced by counsellors.
As suggested by respondents, counsellors will explain HIV transmission pathways, the concept of antibody-based testing, the window period, the need to continue using condoms, and how to link to care. Printed materials explaining how to use the kit will be provided in the local Xhosa language. Follow-up will involve enquiring about test results via mobile phone technologies, asking about harms and measuring linkage to care.
Martínez Pérez G et al. ‘I Know that I Do Have HIV but Nobody Saw Me’: Oral HIV Self-Testing in an Informal Settlement in South Africa. PLoS ONE 11(4): e0152653. 2016. (Full text freely available).