Background: In the context of ever-expanding opportunities to undergo HIV testing, we sought to understand the circumstances under which people living with HIV/AIDS (PLHIV) learned their status and considered how these experiences influenced their subsequent engagement in HIV care.
Methods: As part of a multi-site qualitative study to understand bottlenecks in HIV care, we conducted in-depth interviews with 5-10 health providers and 20-30 PLHIV in: Uganda, South Africa, Tanzania, Kenya, Malawi and Zimbabwe. Topic guides explored patient and provider experiences of HIV testing and treatment services. Themes were derived through inductive and deductive coding aided by NVivo10. Ethical approval was gained in all countries.
Results: In all sites, providers primarily viewed testing as an opportunity for delivering moral messages regarding sexual behaviours and expectations of HIV clinic use. In contrast, PLHIV were rarely motivated by the opportunity to gain health workers'' advice, but rather wanted to “check” or “know” their status, particularly if they were ill, or perceived themselves at risk from a partners'' known or unknown status and sexual behaviours.
HIV testing through provider-initiated models was generally appreciated by PLHIV, but was rarely perceived as a choice, and there were instances of coercion including excessive insistence on “counselling until acceptance”, testing without consent or withholding further medical attention. Responses to “submission” during the testing process included subsequent disengagement from the HIV care process.
Repeat testing was common, even among those already diagnosed, and could be provider or patient-initiated. Providers rarely accepted documented test results from other facilities. Some patients re-tested because of doubts over the accuracy of prior test results, or over the persistence of HIV infection after treatment initiation. However both cases represented an opportunity to develop familiarity with clinic and testing procedures, as well as to build mutual trust with health workers.
Conclusions: Opt-out clauses in provider-initiated testing must be respected. Provider-initiated re-testing suggests missed opportunities for communication between service providers. Patient-initiated testing and re-testing represented an enactment of agency in the context of uncertain risks, which was often more important in promoting acceptance of an HIV diagnosis and facilitating engagement with long-term care than the moral messages delivered by counselors.

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