‘It’s better to treat a COVID patient than a HIV patient’: using feminist participatory research to assess women’s challenges to access HIV care in Indonesia during the COVID-19 pandemic

Abstract

Background: Women living with HIV in Indonesia encounter challenging obstacles to healthcare, which is exacerbated by COVID-19. Access is difficult as there are limited numbers of poorly supported healthcare providers. Women also face significant stigma when disclosing their HIV-status. Objectives: Our main purpose is to give a voice to disempowered women living with HIV, by normalising the discussion of HIV, to empower health professionals to better understand the issues faced by women living with HIV, and develop improved treatment practices. Design: Our project was guided by a Feminist Participatory Action Research (FPAR) framework. FPAR refers to ‘a participatory and action-oriented approach to research that centres gender and women’s experiences both theoretically and practically’. It creates meaningful participation for women throughout the research process, ensuring a collective critical consciousness that challenges oppressive attitudes, beliefs, and practices that may be deeply embedded in society. Method: Purposive sampling and a thematic analysis was applied to focus group discussions with 20 women living with HIV and 20 women without HIV in Palembang, South Sumatra. Results: When women living with HIV face a difficult decision, do they disclose their status knowing that they may face stigma and even a refusal to be treated; or do they conceal their status and face not receiving the right care? In this article, we explore the stories of women living with HIV as they seek medical treatment during the COVID-19 pandemic. We show that there is no optimal solution for women as they lose whether they disclose their HIV status or not. Conclusion: Women’s stories around HIV and COVID-19 intersect with conditions such as poverty and discrimination, as well as embedded gender systems, creating overlapping barriers to treatment. Government must challenge this culture by introducing a comprehensive sex and HIV education programme. This would normalise discussions of HIV-related topics, leading to improved health outcomes.