‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa

Background: Young women living with perinatal infections of the Human Immunodeficiency Virus (YWLPHIV) in low- and middle-income countries are more likely to be challenged by social and health inequities, which can make adherence to life-long treatment difficult. We aimed to learn more about how YWLPHIV in Cape Town negotiated their adherence to antiretroviral treatment (ART) within their material environments. Methods: We adopted a multisensory arts-based community participatory approach and used visual and digital mediums for data-collection and analytical purposes. We developed an Adherence Assemblage model to guide our study. The co-research team consisted of three academics, seven YWLPHIV (although they approved the study they could not be named as authors to protect their identities), one counsellor and two visual ethnographers. Results: We co-creatively synthesised our findings into one research documentary and five co-creative artworks. We synthesised four storylines: ‘living with a (un)exposed HIV secret’, ‘multisensory experience of adherence’, ‘things that matter in adherence’, and ‘engaging spaces and places’. Things such as the pill itself were perceived as triggers for associated memories and evoked emotional responses, impacting the adherence behaviours of YWLPHIV. At times, non-adherence was used as an act of control, with young women claiming power by rejecting the pills. Besides the more obvious lines of argument on power dynamics, the findings suggest that materiality influences adherence too. However, it is seldom used as an analytical concept to investigate challenges related to ART. Conclusions: In conclusion, understanding the material environment's role in adherence is crucial for developing more effective support systems for YWLPHIV. Further research that prioritises the specific needs of YWLPHIV emotional, cognitive, and psychosocial development, while paying attention to the material environment is needed.