HIV Shame, Stigma, Mental Health Functioning and Barriers to Medical Care Access Among Adolescents Living with HIV in Uganda

Background and Purpose. HIV shame and stigma have been documented as major barriers to combating the spread of HIV and undermining HIV treatment outcomes. Specifically, HIV shame prevents individuals living with HIV from disclosing their HIV status to family members, friends, sexual partners and service providers. It also prevents individuals from getting tested, including pregnant women –limiting them from engaging in prevention of mother to child transmission of HIV programs. Moreover, both stigma and shame prevent caregivers from disclosing HIV status to their perinatally infected children and can prevent people from engaging in care and or being retained in care, which exacerbates the psychological impact of living positively with HIV. In sub-Saharan Africa (SSA), studies investigating shame among adolescents living with HIV (ALHIV) are still limited. Emerging literature has documented the relationship between shame and adolescents’ mental health functioning. However, studies investigating how shame and mental health is associated with access to medical care among ALHIV are almost nonexistent. Yet, shame has been documented as barrier to participating in HIV-related clinical trials in adult populations—pointing to reduced health care service utilization and lower quality of life. This study examined the relationship between HIV shame, stigma, mental health and barriers to medical care access among ALHIV in Uganda.

Methods: We analyzed data from a two-year pilot study (2020-2022) for adolescents living with HIV. A total of 89 child-caregiver dyads (N=178) were recruited into the study. Adolescents were eligible to participate if they were: 1) living with HIV and aware of their status; 2) between 10-14 years; 3) enrolled on antiretroviral therapy; and 4) living within a family, including with extended family. Multivariate regression analyses were conducted to determine the relationship between shame, stigma-by-association, adolescents’ mental health (measured by the Child Depression Inventory, Beck Hopelessness Scale, UCLA Loneliness Scale, Childhood Post-Traumatic Stress Reaction Index, and Tennessee Self-Concept Scale) and barriers to medical care access.

Results: The average age was 12.2 years, and 56% of participants were female. In terms of barriers to medical care access, 46% of participants agreed that they did not have transportation to medical care, 42% indicated that the clinic hours were inconvenient for them, and 40% were unable to pay for medical care. Regression analyses indicated that HIV shame (b=0.211, 95% CI=0.055, 0.367, p=0.008), stigma-by-association (b=0.118, 95% CI=0.018, 0.219, p=0.022), depressive symptoms (b=0.154, 95% CI=0.020, 0.288, p=0.025), PTSD symptoms (b=0.029, 95% CI=0.007, 0.050, p=0.011), and loneliness (b=0.067, 95% CI=0.025, 0.108, p=0.002) were all associated with barriers to medical care access. On the other hand, self-concept (b=-0.068, 95% CI=-0.108, -0.028, p=.001) was inversely associated with barriers to medical care access.

Conclusion: Study findings contribute to the limited literature examining HIV shame and barriers to medical care access among ALHIV in SSA. Findings support the need for the development of strategies to help adolescents overcome the shame of living with HIV and mitigate the effects of shame on access to and utilization of health care services.