Preliminary Impact of Group-Based Interventions on Stigma and Mental Health of Caregivers of Adolescents Living with HIV in Uganda

Background and Purpose: Caring for individuals living with HIV is associated with significant caregiving burden, stress, and strain. Initial HIV diagnosis for children has been associated with disruptions in family cohesion, family structures – including spousal abandonment and family separation, status disclosure concerns, daily care burden, and increased financial constraints related to the cost of treatment and care. Caregivers also experience HIV-associated stigma and discrimination from other family members and the community, manifested through gossip, name-calling, rejection, isolation, and loss of social support. Stigma by association has been associated with poor caregiver mental health and parenting stress. However, few studies have incorporated stigma reduction components for caregivers of adolescents living with HIV (ALHIV). Yet, ALHIV depend on their caregivers for care, support, and adherence to treatment protocols. This study examined the preliminary impact of group-cognitive behavioral therapy (G-CBT) and a family-strengthening intervention delivered via multiple family groups (MFG-FS) on HIV stigma, parenting stress, and the mental health of caregivers of adolescents living with HIV.

Methods: We analyzed data from a two-year (2020-2022) pilot randomized clinical trial for ALHIV and their caregivers in Uganda (N=89 child-caregiver dyads). Participants were randomized at the clinic level to three study conditions (n=3 clinics per condition): Usual care, G-CBT or MFG-FS. The interventions were provided for 3 months. Data were collected at baseline, 3 and 6-months post intervention initiation. We fitted mixed-effects linear regression models to test the effect of the interventions on caregivers’ outcomes (HIV stigma, parenting stress, and mental health) over time.

Results: The average age was 47.4 years, and 78% of caregivers were female. At six months, caregivers randomized to the MFG-FS condition reported lower levels of stigma by association (mean difference = -1.45, 95% CI = -2.52 – -0.38, p = 0.008), and stigma and discrimination attitudes (mean difference = -3.84, 95% CI = -4.63 – -3.05), p < 0.001), compared to Usual care condition. In addition, caregivers of adolescents randomized to the G-CBT condition reported lower levels of stigma and discrimination attitudes at three months (mean difference = -5.18, 95% CI = -9.13 – -1.22, p = 0.010), and at six months (mean difference = -6.70, 95% CI = -9.28 – -4.12, p < 0.001). Caregiver mental health and parenting stress significantly reduced over time regardless of intervention condition.

Discussion Findings point to the importance of incorporating stigma reduction components within psychosocial interventions targeting adolescents and families impacted by HIV. Group-based interventions provide opportunities for caregivers and their families to normalize shared experiences including those related to HIV stigma and discrimination, and other HIV-related caregiving experiences, and help to foster social support and enhance coping skills.