Impact of Disclosure over Time on the Emotional Well-Being of Children with Perinatally Acquired HIV Infection in South Africa

OBJECTIVE: The aim of this study was to describe the disclosure process in children with perinatally acquired HIV infection (PHIV+) and its impact on their emotional well-being and adherence to antiretroviral therapy (ART) in South Africa. METHODS: This prospective cohort study followed PHIV+ children aged 7 to 13 years attending counseling over 18 months. Standardized disclosure tools were used by a counselor with both child and caregiver present. Assessments included the Child Behavior Checklist (CBCL), Vineland Adaptive Behavior Scale (VABS), Child Depression Inventory (CDI), and Revised Children's Manifest Anxiety Scale (RCMAS). Adherence to ART was recorded through pharmacy pill returns. Changes over time and their differences from baseline were assessed by linear mixed models. RESULTS: Thirty children with median age 10 years (interquartile range [IQR]: 9.0–11.0) were enrolled. The median time to disclosure was 48 weeks (IQR: 48.0–54.6). There was a significant decrease from baseline (p < 0.0001) and over time (p = 0.0037) in the total CDI score. A positive trend in the changes from baseline and over time was observed for internalizing (p values < 0.0001) and externalizing (p values < 0.0001) CBCL scales and Total Anxiety score of the RCMAS (p < 0.0001 and p < 0.0002, respectively). Only the Defensiveness median T-score increased during the follow-up (p = 0.004) and in the change from baseline (p = 0.0005). The adaptive (p = 0.0092) and maladaptive (p < 0.0001) scores of the VABS showed a decrease from baseline. ART adherence remained high throughout this study. CONCLUSION: Disclosure does not worsen the child's emotional well-being and adherence to ART over time. This study adds to research from low- and middle-income countries to alleviate fears that disclosure may have an adverse outcome on children with PHIV+.