“If I don’t take my treatment, I will die and who will take care of my child?”: An investigation into an inclusive community-led approach to addressing the barriers to HIV treatment adherence by postpartum women living with HIV

Introduction: Initiatives to support adherence to HIV treatment in South Africa are often centred on service delivery thereby avoiding key challenges to adherence: stigma and poverty. In contrast, this study aims to demonstrate the strength of an inclusive research and programme approach to improving the lives of people living with HIV and simultaneously ARV adherence. Methods: Participatory Action Research combined with a visual participatory method (Photovoice) was used by postpartum women to share their experience of taking ARVs. The research was analysed from an interpretative and critical paradigm where both the women and a non-governmental organisation collaborated in the data collection, analysis and interpretation of the findings. Together, they then disseminated the findings and used a community-led approach to create a programme addressing these barriers effectively. Findings: Two main barriers to ARV adherence emerged: the anticipated stigma associated with issues of disclosure and poverty epitomized by alcohol abuse, gender-based violence and hunger. The women and the NGO staff successfully presented their findings at conferences and collaborated to develop a programme of support for all women living with HIV in the area. The programme addresses each of the issues raised by the co-researchers and is run via a community-led process where the participants lead on design, implementation, and monitoring and ultimately will revise the programme as needed. Discussion: The inclusive approach of this study enabled these postpartum women to portray the intersectional nature of both HIV stigma and poverty that affects their lives. By working with the local NGO to develop a programme based on these insights, they were able to tailor specific interventions to the issues women living with HIV face in their area. In doing so, they aim to improve the lives of people living with HIV by demonstrating a more sustainable way to impact ARV adherence. Conclusion: Currently, health service insistence on measuring ARV adherence does not address the core barriers to taking ARVs and misses the opportunity to focus on the long term health and well-being of people living with HIV. In contrast, locally targeted participatory research and programme development based on inclusivity, collaboration and ownership do address the fundamental challenges of people living with HIV. In doing so, it can have a greater impact on their long term well-being.