Deliberative dialogues in rural South Africa reveal public support and communication challenges in HIV cure research: uMkhanyakude district, KwaZulu-Natal.

Abstract

Background: There is a need to build public support for the conduct of HIV cure research. It is important to enhance the public understanding of HIV cure strategies in resource-constrained settings with high HIV prevalence. Adopting deliberative approaches allows information to be shared interactively, building knowledge on the topic and unpacking the complexity of the science.

Methods: We conducted deliberative community dialogues in rural KwaZulu-Natal, South Africa, with the Africa Health Research Institute community engagement team and Community Advisory Board members. We discussed the public understanding of 'HIV cure' and current scientific approaches. Detailed written notes were taken in anonymised format. Data were later analysed thematically, with three main themes identified: (i) understanding of HIV cure trials; (ii) HIV scientific procedures; and (iii) HIV cure messaging.

Results: Participants' questions and discussion revealed support for research on HIV cure but limited knowledge and understanding. Participants had questions about trial procedures, risks of antiretroviral therapy interruptions, efficacy, cost and monitoring of viral loads. There is need for simple, accessible language about the complex science to avoid misunderstanding among community members.

Conclusion: On going challenges in effectively communicating complex scientific concepts highlight the importance of ongoing community engagement and education in HIV cure research.