‘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.

Prevention of mother-to-child transmission of HIV service interruptions amid COVID-19 pandemic

“… 9 An Indonesian study established that response activities meant to curb the pandemic were prioritised at the expense of other public health interventions, such as the provision of HIV services. 10 Moreover, healthcare settings were overwhelmed with a high number of patients and lacked the infrastructure and resources to promote social distancing. Findings from a South African study also outlined that migrants on PMTCT programmes faced treatment interruptions as borders were closed and required official documents for them to receive care.…”

Lived Experience, Social Support, and Challenges to Health Service Use during the COVID-19 Pandemic among HIV Key Populations in Indonesia

“…Yet despite a growing body of global research in multiple countries around the globe, few studies appear to speci cally examine the combined effect of HIV and COVID-19 on the life experiences and psychosocial well-being of PLWH in Southeast Asia. The few exceptions include research investigating personal access to health care and supportive services in Malaysia among PLWH who use drugs [4], HIV disclosure dilemmas among HIV-positive women seeking COVID-19 treatment in Sumatra, Indonesia [5], and COVIDrelated threats to health and well-being among vulnerable HIV groups in Vietnam [1].…”