Non-adherence to antiretroviral therapy (ART) among people living with HIV (PLWH) in South Africa remains a significant challenge. Interventions often focus on supply-chain improvements or technology-based reminders, neglecting the lived experiences of those affected. This study questions the effectiveness of such approaches, particularly for postpartum women, a high-risk group globally and in South Africa, where 50% are lost to care within six months postpartum. High poverty levels among female-headed households in the Eastern Cape, combined with pervasive HIV stigma, are known to be significant factors. This study uses a collaborative, person-centred Participatory Action Research (PAR) approach, employing Photovoice, to investigate barriers to adherence directly from the perspective of postpartum women. By centering the women’s experiences, the aim is to develop a program that directly tackles these barriers and measures success based on improvements in their quality of life, rather than solely on viral load or pill counts.

Existing literature highlights the strong correlation between poverty and poor ART adherence among women living with HIV. Studies demonstrate struggles related to food security, housing, transportation costs, and the belief that ARVs should not be taken on an empty stomach. Poverty also increases vulnerability to intimate partner violence, further impacting adherence. HIV stigma, encompassing internalised, externalised, and anticipated stigma, is a significant barrier. Anticipated stigma, the fear of prejudice and discrimination, often prevents individuals from initiating or continuing treatment. Previous studies indicate a lack of action following Photovoice research, underscoring the importance of ensuring participant ownership and translation of findings into tangible interventions. Prior research has called for a re-orientation of HIV research to a person-centred approach, where PLWH lead the research process and program design.

This study employed a PAR methodology using Photovoice, a participatory approach where participants use photography to express and share their experiences. The study was conducted in Ngqushwa Municipality, Eastern Cape, South Africa, a region characterized by high poverty and HIV prevalence. Ten postpartum women living with HIV, selected from four clinic catchment areas, participated as co-researchers. A three-part training program equipped the co-researchers with photography skills and introduced the Photovoice technique, emphasizing anonymity and confidentiality. Over four weeks, each co-researcher took photographs illustrating barriers to ART adherence, followed by individual debrief sessions with Ubunye Foundation staff, which were recorded and transcribed. Adaptations to the traditional Photovoice process were implemented to prioritize individual confidentiality and comfort. Data analysis involved translation, coding using NVivo, and iterative review with the co-researchers to ensure accuracy and meaning. The "Action" phase of the PAR involved disseminating findings at conferences, submitting to a research competition, and engaging with local Department of Health representatives. Critically, the co-researchers led the design and implementation of a community-led program, "Lelethu," to address identified barriers.

The co-researchers identified two primary barriers to ART adherence: anticipated stigma and poverty. Anticipated stigma was described as the most powerful barrier. Women meticulously concealed their HIV status to avoid potential rejection or discrimination from family, partners, and community members. The act of taking ARVs daily was a constant source of anxiety, associated with potential exposure of their status. Several 'hot spots' were identified—situations where the risk of disclosure was particularly high (e.g., collecting medication at the clinic, storing medication at home). The women described going to great lengths to avoid these situations, sometimes leading to missed doses. Poverty presented further challenges; the women experienced difficulties meeting basic needs such as food, shelter, and clothing. Lack of food specifically was directly linked to missed doses. While the women strongly desired to adhere to their medication to protect their children, financial constraints created additional hardship. The analysis also reveals distinct characteristics that affect adherence among this group. First, the overwhelming responsibility for child care creates a strong imperative to stay healthy. Second, their positive experience of ARVs protecting their children strengthens their commitment to adherence. Lastly, immense guilt over potentially infecting their children is a significant motivator for maintaining secrecy around their HIV status. Dissemination of findings included conference presentations and a community research competition award. This subsequently led to the development of a community-led program, ‘Lelethu’, featuring Life Plans to address personal challenges, stigma reduction initiatives through open conversations, economic empowerment programs with Life Skills training, and peer support via WhatsApp groups.

This study demonstrates that a PAR approach using Photovoice is highly effective in understanding and addressing barriers to ART adherence among postpartum women living with HIV. The findings highlight the critical interplay of anticipated stigma and poverty, shaping the women's lives in profound ways. An intersectional lens reveals how these women occupy the intersection of HIV-related stigma and gender inequality, which is further exacerbated by poverty. This study moves beyond traditional biomedical markers of adherence (viral load, pill counts) to focus on improvements in quality of life as a measure of success. The women's leadership in program design and implementation is crucial for creating sustainable change. The Lelethu program’s initial results show positive impacts on employment, entrepreneurship, further education, and community advocacy, illustrating the efficacy of this participatory approach.

This study demonstrates the effectiveness of a participatory action research approach to addressing ART adherence among postpartum women living with HIV. By centering the women's experiences and empowering them as co-researchers, the study successfully identified key barriers and led to the creation of a community-led program focused on improving their overall well-being. This approach challenges the limitations of traditional biomedical interventions by prioritizing quality of life as the primary outcome measure. Future research should focus on scaling this model to other communities and evaluating the long-term impact of the Lelethu program. Further research is also needed to expand the methodology to different demographic groups.

The study’s limitations include its small sample size and focus on a specific geographic area. The findings may not be generalizable to all postpartum women living with HIV in South Africa or other regions. While the study highlights successful implementation of the Lelethu program, longer-term evaluation is necessary to assess its sustained impact. The limited scope of the study prevents a broader generalisation of the results to other contexts, demographic groups, and healthcare systems.