Health literacy among Malawian HIV-positive youth: a qualitative needs assessment and conceptualization

Despite growing evidence of the significance of health literacy in managing and coping with acquired immune deficiency syndrome (HIV), it is not yet an integrated part of HIV/AIDS-related health promotion research and practice in Africa. This article contributes to addressing the gap in research on health literacy and HIV in Sub-Saharan Africa. We aimed to assess health literacy-related needs of young people living with HIV (YPLHIV) and adapt existing health literacy frameworks to the context of HIV/AIDS in Malawi. We used focus group discussions to collect data from a sample of the membership of the national association of YPLHIV. Twenty-four HIV-positive youth (18-29 years) participated in focus group discussions. Participants came from three regions of Malawi. Additionally, we conducted three in-depth interviews with key informants. We used a thematic framework approach to analyse data in MAXQDA. We contextualized definitions of four dimensions of health literacy: functional, interactive, critical and distributed health literacy, which we used as an a priori analytical framework. To further contextualize the framework, we revised it iteratively throughout the analysis process. We identified the need for comprehensive information about HIV and sexual reproductive health, skills to interact with healthcare providers and navigate the health system, and skills to appraise information from different sources, among others. The identified needs were translated into nine action recommendations for the national association of YPLHIV, and with relevance within the wider HIV sector in Malawi and beyond. We found that the dimensions in our analytical framework operate on the individual, system and public policy levels.