‘ARVs are a constant reminder of lost freedom, whereas for others, they are liberating’: understanding the treatment narrative among people living with HIV (PLHIV) in Malawi and Zimbabwe–a qualitative study

Abstract

Objective The aim of the research was to understand what drives and motivates young women living with HIV in their treatment journeys, as well as their key influencers. The findings will assist in appreciating their obstacles to treatment and constructing the most effective ways to convey fresh messages to them. These insights will contribute to the messaging developed for a campaign across sub-Saharan Africa, primarily Malawi and Zimbabwe.Design This was a qualitative study conducted in order to build an understanding of unknown parts of the HIV treatment journey through in-depth interviews. A hybrid approach was used to conduct thematic analysis.Setting and participants Study participants were HIV-positive women, their influencers (eg, parents/partners/siblings/aunts and uncles/religious leaders, etc) and healthcare providers from a range of regions in Zimbabwe and Malawi.Results A total of 26 young people living with HIV (PLHIV), 29 healthcare providers and 24 influencers such as maternal figures in the community were interviewed. Two main broad insights were drawn, that is, key needs and wider contextual factors. The key needs of young PLHIV to stay on treatment were empathy, support and emotional connection with antiretroviral therapy (ART), while the wider contextual factors impacting their treatment journeys were structural challenges and cultural reference points. Fear of shame and humiliation can also be significant barriers to disclosure and treatment. The fear predisposes the PLHIV to the need for empathy, support and connection with ART. Mental health and anxiety appear to be comorbid with HIV. Some PLHIV have a small and limited support network leading to very few people living openly with HIV. There is no ‘one-size-fits-all’ approach, and maximising campaign reach will likely need a multifaceted approach.Conclusion Currently, the relationship between nurses and PLHIV can appear to be transactional. Through learning about the community (including PLHIV), there are more chances of communicating in a way that resonates.