HIV cure research in South Africa: a preliminary exploration of stakeholder perspectives

ABSTRACT

Innovative strategies for HIV cure are in development and research studies are being designed and planned globally. South Africa is no exception. However, little is known about stakeholders’ knowledge, understanding and expectations of future cure research. This study aimed to obtain in-depth qualitative insights into stakeholder perspectives at this formative stage of HIV cure research. Fifteen stakeholders were interviewed in an HIV research clinic in the Western Cape, South Africa with their consent. Interviews were transcribed verbatim and analysed using thematic content analysis. Broad themes that emerged included the meaning of cure, awareness of HIV cure research, risks and benefits of such research. General awareness and understanding of HIV cure research was lower than expected. Some participants expressed a fatalistic attitude to HIV and described it as an “end-time illness” with no prospect of cure. In general, HIV cure research was regarded as risky – biologically psychologically and socially. If study designs were to include treatment interruption, participants would comply only if success was guaranteed. Given these perceptions of HIV cure research, significant challenges to consent processes and participant recruitment can be anticipated. Authentic community engagement and intensive educational interventions will be necessary prior to future cure research in South Africa.

KEYWORDS:

• HIV cure research
• ethics
• community engagement

Acknowledgements

The authors would like to thank Nomazizi Cishe, Chris Colvin, Erin Stern and all the participants of this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Support for this work was provided by the Brocher Foundation, the UNC Center for AIDS Research [NIAIAD P30-AI50410], and the Social and Ethical Aspects of Research on Curing HIV (searcHIV) Working Group [NIAID R01A108366-01]. The Working Group's composition and rationale is explained at http://searchiv.web.unc.edu/.