If you build it, will they come? A qualitative investigation into community barriers to accessing paediatric HIV services in Kenya

We present qualitative research investigating demand-side barriers to uptake of paediatric HIV services in Kenya. We explore community perceptions of services in 3 provinces where paediatric treatment is readily available but under-utilised, aiming to focus on demand-side obstacles and derive strategies for increasing uptake. We conducted focus-group discussions with openly HIV-positive parents and caregivers of children aged up to 15 years (n = 7 groups), and clinic- and community-based healthworkers (n = 13 groups); and individual in-depth interviews with managers and Ministry of Health representatives (n = 6 interviews). Results revealed low community awareness of medical indications for paediatric HIV testing, alongside widespread anxieties about potential infection routes. Care-seeking delays reflect strong perceived associations between antiretroviral treatment (ART) and mortality. Despite free drugs available from the Kenyan government, costs for laboratory services, medications for opportunistic infections, transportation and nutritional needs remain major obstacles. Attitudinal barriers include fatalistic beliefs about early death for infected children and reliance on traditional healers. Stigma reduces access, especially as paediatric testing represents a “window” into parental HIV status. Apprehensive caregivers fear the lifelong nature of ART and report adherence struggles. Even when paediatric ART is relatively accessible, demand-side barriers impede uptake and must be addressed at community and facility levels.