Stigma By Association, Parenting Stress and the Mental Health of Caregivers of Adolescents Living with HIV in Uganda

Background and Purpose: Stigma is a major health determinant associated with morbidity, mortality, and health disparities. HIV-related stigma has been documented as a major barrier to all aspects of HIV prevention, care and treatment services, including delayed HIV testing and care enrollment, increased risk of non-retention in care, non-adherence to antiretroviral therapy, and status nondisclosure. While family members of people living with HIV, including children, may not be HIV positive, they experience the negative effects of stigma by association –defined as prejudice and discrimination against individuals who are associated with stigmatized individuals. Studies have documented the negative psychosocial impact of HIV-related stigma on caregivers of people living with HIV. In sub-Saharan Africa, however, the majority of studies have explored caregivers’ experiences with people living with HIV. Very few studies have investigated how HIV-related stigma impacts caregivers’ mental health. Yet, caregiver mental health directly impacts the wellbeing of children under their care, quality of care provided and overall family functioning. This study examined the relationship between stigma by association, parenting stress and the mental health of caregivers of adolescents living with HIV.

Methods: Data from a two-year pilot study (2020-2022) for adolescents living with HIV and their caregivers in southern Uganda were analyzed. A total of 89 child-caregiver dyads (N=178) were recruited into the study. Adolescents were eligible to participate if they: 1) were living with HIV and aware of their status; 2) between 10-14 years; 3) enrolled on ART in participating clinics; and 4) living within a family, including with extended family. Caregivers were eligible if, they identified as the primary caregiver of the adolescent and were willing to complete study activities. Multivariate regression analyses were conducted to examine the relationship between stigma-by association, as measured by the adapted Brief Stigma-by Association Scale, and caregiver mental health assessed using the Brief Symptom Inventory, and Parenting Stress Index.

Results: The average age was 47 years, 77.5% were female, and 49% identified as the child’s biological parent. Stigma-by-association was associated with poor caregiver mental health (b=1.198, 95% CI =0.36, 2.04) and high levels of parenting stress (b=1.328, 95% CI = 0.69, 1.96). Caregiver’s gender, biological relatedness to the child, household composition and family cohesion were uniquely associated with caregiver mental health and parenting stress.

Conclusion and Implication: Study findings indicate that stigma by association is associated with poor mental health and parenting stress. However, family cohesion and having children in the household may help mitigate some of these risks. Taken together, these findings point to the need to incorporate stigma reduction components, not only for adolescents living with HIV, but also their caregivers, to counteract the effects of stigma on their mental health.