Identifying HIV-exposed uninfected children and adolescents in resource-limited settings: the HOPE study experience

HIV-exposed uninfected (HEU) children and adolescents are at higher risk of poor outcomes compared to HIV-unexposed children (HUU). In program settings, it is critical to understand how to identify HEU for screening services. We describe our experience identifying HEU for a neurodevelopment and mental health screening study. We recruited mothers living with HIV (MLHIV) and mothers not living with HIV (MNHIV) and enrolled their HEU or HUU children. We summarise the reasons for ineligibility and recruitment challenges. Among MLHIV, their child's ineligibility increased with age: 12%, 27%, 50% and 80% in age groups 3-6, 7-10, 11-14, and 15-18, respectively (p < 0.001). Reasons for ineligibility were unknown maternal HIV status during pregnancy or breastfeeding (30%), and maternal disinterest due to fear of inadvertent disclosure of their HIV status to older youth. Recruiting older HEU youth is challenging. Maternal concerns of self-disclosing their HIV status impedes identification of older HEU.