Changes in caregiver psychosocial factors known to affect pediatric HIV disclosure: the Sankofa clinical trial experience in Ghana (2013–2023)

This comparative study analyzed changes in caregiver-related factors known to influence pediatric HIV disclosure using baseline data from two clinical trials in Ghana–Sankofa 1 (recruitment 2013–2016) and Sankofa 2 (recruitment 2021-2023). Changes in caregiver characteristics and psychosocial domains were measured using validated instruments: social support (Social Provisions Scale), HIV knowledge (Brief HIV Knowledge Questionnaire), illness perception (Brief Illness Perception Questionnaire) and HIV stigma (HIV Stigma Scale). Caregivers of children aged 7–18 years who had not disclosed the child’s HIV status completed the same structured questionnaires at baseline. Changes from Sankofa 1 to Sankofa 2 baseline periods in psychosocial domains were modeled using multivariable linear regressions. Compared to Sankofa 1, caregivers in Sankofa 2 were more likely to be female (85.6% vs. 81.6%), single (19.7% vs. 13.9%), without formal education (20.5% vs. 16.3%), HIV positive (66.0% vs. 60.2%) and earn higher incomes (47.1% vs. 27.6% > 300 GHS/month). From Sankofa 1 to Sankofa 2, social support changed only modestly (mean difference: 0.89, 95% Confidence Interval [CI]:–0.15, 0.92), illness perception worsened (4.48, 95% CI: 3.16, 5.80), stigma increased (2.25, 95% CI: 1.54, 2.95) and HIV knowledge declined (−1.02, 95% CI: −1.29, −0.74). HIV status and younger age were consistently linked to higher stigma. Trial registration:ClinicalTrials.gov identifier: NCT01701635. Trial registration:ClinicalTrials.gov identifier: NCT04791865.