Hiv Disclosure Trajectories and Adherence to Antiretroviral Therapy Among Children in Masaka Region, Uganda

Abstract

This study examined the HIV disclosure trajectories and antiretroviral therapy (ART) adherence among children living with HIV in the Masaka region of Uganda. Specifically, the study explored the sociocultural factors that influence HIV status disclosure to children, the experiences of children receiving disclosure of their HIV status, and the association between HIV status disclosure to children and ART adherence. The Critical Medical Anthropology (CMA) theory and the Children’s Health Belief Model (CHBM) were the theoretical lenses used to understand disclosure influencers, experiences, and associations between HIV disclosure to children and ART adherence. A sequential explanatory mixed-methods research design was adopted with survey questionnaires, in-depth interviews (IDIs), and key informant interviews (KIIs) as the main data collection methods. Data were collected from 524 purposively selected children, 26 caregivers, and 18 healthcare providers also purposively sampled. Data were analyzed by multivariable Poisson regression and thematic analysis respectively. The findings showed that sociocultural factors positively or negatively influence HIV disclosure to children taking daily ART. The positive socio-cultural influencers included the use of HIV disclosure standard operation procedures (SOPs)/guidelines/policies, the belief that children are old enough to keep confidentiality, and the impetus to seek additional disclosure counseling from healthcare providers. The negative sociocultural influencers of HIV disclosure to children included concerns of social rejection/stigma, prioritizing disclosure for children with high HIV viral load, and child schooling. Children’s experiences of receiving disclosure of their HIV diagnosis were largely negative. They included receiving disclosure as a one-event without prior planning or additional post-disclosure follow-up support, experiences of disclosure provoking distress, anger, and irritation, and post-disclosure psychosocial encounters resulting in insults and stigmatization. The associations between HIV disclosure to children and ART adherence were not statistically significant. ART adherence was significantly less likely among in-school children and children with primary or lower education than out-of-school children with post-primary education. Also, children who switched to second-line ART regimens were significantly less likely to adhere to ART than children on first-line ART regimens. Overall, the HIV disclosure trajectories in this study did not support ART adherence among children. The study recommends interventions to address single-event HIV status disclosures and poor ART adherence particularly among school-going children before they start to refuse ART or get switched to second-line ART regimens.