When information does not suffice: young people living with HIV and communication about ART adherence in the clinic

Despite mounting evidence recommending disclosure of human immunodeficiency virus (HIV) status to young people with perinatally acquired HIV as a central motivating factor for adherence to antiretroviral therapy, many young people continue to experience disclosure as a partial event, rather than a process. Drawing from two longitudinal, interview-based qualitative studies with young people living with HIV (aged 10–24) in five different countries in low and high income settings, we present data regarding disclosure and information about HIV in the clinic. The article highlights the limits of discussions framing disclosure and patient literacy, and young people’s reluctance to voice their adherence difficulties in the context of their relationships with clinical care teams. We suggest that a clinician-initiated, explicit acknowledgment of the social and practical hurdles of daily adherence for young people would aid a more transparent conversation and encourage young people to disclose missed doses and other problems they may be facing with their treatment. This may help to reduce health harms and poor adherence in the longer-term.