The Effect of Family Responsibility on Self-Reported Adherence to ART Among Adolescents Perinatally Infected with HIV in Uganda: A Mediation Analysis

Background and Purpose: Social support, especially from family members, has been shown to influence adherence to treatment protocols. Specifically, perceived emotional support from family members, family cohesion and social support from caregivers, as well as caregiver characteristics such as education level, knowledge about the importance of treatment and adherence, are all associated with improved adherence. However, while several studies have investigated the role of social support, the mechanisms through which family support impacts ART adherence is rarely investigated. This study examined the mechanisms through which family responsibility affects self-reported adherence to ART among adolescents perinatally infected with HIV in Uganda. Comprehensive psychosocial services for individuals living with HIV in Uganda, including counseling services and home-based care services are very low and some have been phased out completely, leaving families with the primary responsibility of providing care and support with no or minimal government support. As such, understanding the mechanism through which specific aspects of family support affect adherence, is essential in promoting and facilitating treatment adherence, especially among children and adolescents, whose adherence needs depend largely on their caregivers.

Methods: Longitudinal data from a 5-year (2012-2017) randomized experimental study for adolescent living with HIV in southern Uganda (N=702) were analyzed. Adolescents were eligible to participate if they were HIV-positive as confirmed by medical records, and disclosed to, prescribed antiretroviral therapy, lived within a family, and enrolled in one of the 39 health clinics in the study region. A latent construct for adherence was generated using six items assessing self-reported adherence. Family responsibility was measured using 3 items: availability of medication support, frequency and level of involvement of medication support. Mediator variables included caregiver support, caregiver communication, food security, having personal savings, savings attitudes and school enrollment. We fit structural equation models to assess the direct, indirect, and total effects of family responsibility on self-reported ART adherence.

Results: Results showed a significant indirect effect of family responsibility on adherence (b = 0.112, 95% CI: 0.052 – 0.173, p<0.001). Specific indirect effects of family responsibility through saving attitudes (b = 0.058, 95% CI: 0.008 – 0.108, p=0.024), and communication with the guardian (b = 0.056, 95% CI: 0.012 – 0.100), p =0.013), as well as the total effect of family responsibility on adherence (b = 0.146 (95% CI: 0.032 – 0.259, p=0.012), were statistically significant. Mediation contributed 76.7% of the total effects.

Conclusion and Implication: Study findings indicate that family responsibility, specifically through child-caregiver communication and positive attitudes towards financial savings to take care of one’s family, is crucial in facilitating and promoting adherence to ART among adolescents. Programs that work to promote treatment outcomes, especially for children and adolescents living with HIV, should incorporate strategies that help caregivers to communicate openly with their children on issues regarding HIV, as well as medication and adherence.