Perceptions and experiences of adolescents living with HIV in Malawi

Background: Malawi is among the countries with the highest HIV prevalence worldwide. Adolescents living with HIV face diverse challenges, such as stigma and discrimination, which influence their emotional wellbeing and long-term health, in addition to impacting HIV onward transmission. Furthermore, HIV education, especially the use of fear-based animation and visual aids, as well as the figurative language used for HIV, contributes to how young people perceive and respond to their HIV status, leading to poor health outcomes and decreased wellbeing. Aim: The purpose of this study was to explore descriptions, perceptions, and representations of the HIV-virus among adolescents living with HIV in Malawi, as well as the role that the language used for HIV plays in creating this perception of HIV. It further aimed to examine the impact of these interpretations on their experiences and emotional wellbeing. Methods: This qualitative study employed hermeneutic phenomenology and reflexive thematic analysis, and data were collected through semi-structured in-depth interviews, focus group discussions and drawings, which enhanced the elicitation of participants’ HIV perceptions. Participants were sampled purposively and included 16 adolescents living with HIV, attending a peer support group in a hospital within Lilongwe, and five service providers working at this hospital. Results: The adolescents imagined HIV as personified, harmful creature in their body with functional senses and gender identity. Those negative perceptions originated mainly from the local term used for HIV, HIV-related stigma and discrimination and HIV representations in hospital HIV books, which negatively impacted their emotional wellbeing. However, HIV peer support groups were identified as safe environments for learning about HIV and for debating HIV-related topics, especially in view of the usually required silence and secrecy to prevent stigma. Discussion: The findings enhance the understanding of participants’ lived experiences and perceptions of HIV, and thus may contribute to new methods of holistic health education, tailored for adolescents to improve their emotional wellbeing and attitudes towards HIV through context-specific programmes.