Explaining antiretroviral therapy adherence success among HIV-infected children in rural Uganda: a qualitative study

Abstract

High adherence is critical for achieving clinical benefits of HIV antiretroviral therapy (ART) and particularly challenging for children. We conducted 35 qualitative interviews with caregivers of HIV-infected Ugandan children who were followed in a longitudinal study of real-time ART adherence monitoring; 18 participants had undetectable HIV RNA, while 17 had detectable virus. Interviews blinded to viral suppression status elicited information on adherence experiences, barriers and facilitators to adherence, and social support. Using an inductive content analytic approach, we identified 'lack of resources,' 'Lazarus effect,' 'caregiver's sense of obligation and commitment,' and 'child's personal responsibility' as categories of influence on adherence, and defined types of caregiver social support. Among children with viral suppression, high hopes for the child's future and ready access to private instrumental support appeared particularly important. These findings suggest clinical counseling should explore caregivers' views of their children's futures and ability to access support in overcoming adherence barriers.

Fig. 1

Conceptual model of ARV adherence. Initial motivation for ARV adherence appears to come from the ‘Lazarus effect.’ The caregiver's sense of obligation and commitment, bolstered by a caregiver's high hopes for the child's future, acts as further motivation for adherence and for organizing several forms of social support to help in maintaining high adherence. Caregivers are able to access different forms of social support to overcome barriers to adherence, especially private instrumental social support from friends, family, and neighbors, which allowed caregivers to overcome unforeseen adherence barriers. The child also may assume a role in supporting his or her own adherence. Asterisks indicate themes that emerged from the comparative analysis