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 - <i>Sankofa 1</i> (recruitment 2013-2016) and <i>Sankofa 2</i> (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 <i>Sankofa 1</i> to <i>Sankofa 2</i> baseline periods in psychosocial domains were modeled using multivariable linear regressions. Compared to <i>Sankofa 1</i>, caregivers in <i>Sankofa 2</i> 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 <i>Sankofa 1</i> to <i>Sankofa 2</i>, 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.<b>Trial registration:</b> ClinicalTrials.gov identifier: NCT01701635.<b>Trial registration:</b> ClinicalTrials.gov identifier: NCT04791865.