IntroductionAdherence to combination antiretroviral therapy (cART) is vital for HIV-infected adolescents for survival and quality of life. However, this age group faces many challenges to remain adherent. We used multiple data sources (role-play, focus group discussions (FGD), and in-depth interviews (IDI)) to better understand adherence barriers for Rwandan adolescents. Forty-two HIV positive adolescents (ages 12–21) and a selection of their primary caregivers were interviewed. All were perinatally-infected and received (cART) for ≥12 months. Topics discussed during FGDs and IDIs included learning HIV status, disclosure and stigma, care and treatment issues, cART adherence barriers.ResultsMedian age was 17 years, 45% female, 45% orphaned, and 48% in boarding schools. We identified three overarching but inter-related themes that appeared to influence adherence. Stigma, perceived and experienced, and inadvertent disclosure of HIV status hampered adolescents from obtaining and taking their drugs, attending clinic visits, carrying their cARTs with them in public. The second major theme was the need for better support, in particular for adolescents with different living situations, (orphanages, foster-care, and boarding schools). Lack of privacy to keep and take medication came out as major barrier for adolescents living in congested households, as well the institutionalization of boarding schools where privacy is almost non-existent. The third important theme was the desire to be ‘normal’ and not be recognized as an HIV-infected individual, and to have a normal life not perturbed by taking a regimen of medications or being forced to disclose where others would treat them differently.ConclusionsWe propose better management of HIV-infected adolescents integrated into boarding school, orphanages, and foster care; training of school-faculty on how to support students and allow them privacy for taking their medications. To provide better care and support, HIV programs should stimulate caregivers of HIV-infected adolescents to join them for their clinic visits.
Rwanda has achieved high enrollment into antiretroviral therapy (ART) programs but data on adherence after enrollment are not routinely collected. We used a mixed-methods approach (standardized questionnaires, pill counts, focus group discussions, and in-depth interviews) to determine levels of and barriers to ART adherence from the perspective of both patients and healthcare workers (HCW). Data were available from 213 patients throughout the first year on ART; 58 of them and 23 HCW participated in a qualitative sub-study. Self-reported adherence was high (96% of patients reporting more than 95% adherence), but adherence by pill count was significantly lower, especially in the first 3 months. In the standardized interviews, patients mostly reported that they "simply forgot" or "were away from home" as reasons for nonadherence. The qualitative research identified three interrelated constructs that appeared to negatively influence adherence: stigma, difficulty coming to terms with illness, and concealment of illness. Both standardized questionnaires and the qualitative research identified poverty, disruption to daily routines, factors related to regimen complexity and side effects, and service-related factors as barriers to adherence. We conclude that regular triangulation of different sources of adherence data is desirable to arrive at more realistic estimates. We propose that program monitoring and evaluation cycles incorporate more in-depth research to better understand concerns underlying reasons for nonadherence reported in routine monitoring.
Nearly 1 in 3 children showed virologic failure, and >10% of the subgroup of children with treatment failure in whom genotyping was performed demonstrated multiple HIV drug resistance mutations. Neither clinical condition nor CD4 cells were good indicators for treatment failure.
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