Centre for Medical Ethics and Law
PAVE Community Engagement for HIV Cure Research
The Paediatric Adolescent Virus Eradication (PAVE) Martin Delaney Collaboratory, through collaboration between the Centre for Medical Ethics and Law and the Family Centre for Research with Ubuntu (FAMCRU) located within Stellenbosch University are undertaking a community engagement project for HIV Cure Research. This project aims to use participatory action research / participatory visual qualitative methodology in the form of “PHOTOVOICE " to develop community educational tools for HIV cure research.
Although HIV treatment and prevention strategies have had a significant impact on the HIV epidemic globally and in South Africa, barriers to adoption and acceptability of these strategies exist. Adherence, acceptability and possible long term clinical sequelae related to prolonged ARV use for treatment and prevention will be addressed by effective and acceptable strategies for HIV cure. Misconceptions and ethical challenges related to HIV cure research and HIV cure itself are an ongoing barrier to acceptance of the concept of an HIV cure and to related research. Misinterpretation of cure concepts (sterilizing cure vs remission) and ethical issues related to risk and analytical treatment interruptions, fairness and equity in research participation and the impact of scalability and cost related to post trial access and benefit sharing must be addressed with communities. The development of appropriate educational tools developed through participatory research is likely to empower communities and increase acceptability of HIV cure research.
Photovoice is a participatory action research or a participatory visual qualitative method driven by the research participants themselves who take pictures related to a particular subject, interpret the photos and share the interpretation. It has been used successfully previously to address sensitive, stigmatizing topics and has been described as not only a data collection tool but also as an intervention. It is empowering in that it allows participants to identify barriers to change, develop and implement appropriate strategies. It allows for self-reflection to facilitate behavior change.
Study procedures will occur in 2 phases with the information sourced from phase 1 from adolescents living with or affected by HIV, informing the second phase of educational tool development in the form of a video and an online interactive educational tool.
This study is currently undergoing ethics review and is scheduled to commence in October 2022.