Long-Term Antiretroviral Treatment Adherence in HIV-Infected Adolescents and Adults in Uganda: A Qualitative Study

Abstract

BackgroundLong-term success of HIV antiretroviral therapy requires near-perfect adherence, maintained throughout one’s lifetime. However, perceptions towards ART and patterns of adherence may change during the life course. We assessed challenges to long-term adherence in adolescents and adults in three regional HIV treatment centers in Uganda.MethodsWe conducted 24 in-depth interviews and 2 focus group discussions with a total of 33 health-care providers and expert clients (HIV patients on long-term ART who assist with adherence support of fellow patients). Interview topics included experiences with patients on long-term treatment with either declining adherence or persistent poor adherence. Transcribed texts were coded and analyzed based on the social-ecological framework highlighting differences and commonalities between adolescents and adults.ResultsThe overarching themes in adolescents were unstructured treatment holidays, delays in disclosure of HIV status by caretakers, stigma, which was mainly experienced in boarding schools, and diminishing or lack of clinical support. In particular, there was minimal support for early and gradual disclosure for caretakers to the infected children, diminishing clinical support for young adults during transition to adult-based care and declining peer-to-peer support group activities. The predominating theme in adults was challenges with treatment access among temporary economic migrants. Common themes to adults and adolescents were challenges with disclosure in intimate relationships, treatment related factors including side effects, supply of single tablets in place of fixed-dose combined drugs, supply of drug brands with unfavorable taste and missed opportunities for counseling due to shortage of staff.ConclusionAdherence counseling and support should be adapted differently for adolescents and adults and to the emerging life course challenges in long-term treated patients. Programs should also address constraints experienced by temporary economic migrants to ensure continuity of treatment within the host country.

Transition from paediatric to adult care of adolescents living with HIV in sub‐Saharan Africa: challenges, youth‐friendly models, and outcomes

“…These structural barriers are of critical concern and require comprehensive policy support and investments from national governments to train local healthcare providers. Stigma was also identified as a key barrier to transition in five studies [22,[31][32][33][34][35]. Stigma, along with perceived lack of acceptance by communities causes adolescents and young adults to not disclose their status.…”

“…This vulnerability needs to be taken into account when managing the transition process [32]. More generally, perceived stigma, and lack of support are concerns expressed by both male and female adolescents and young adults [31][32][33][34][35].…”

Adherencia al tratamiento anti-retroviral para el VIH/SIDA en mujeres: una mirada socio-cultural

“…Si bien no existe consenso, se sabe que en la adherencia influyen elementos relacionados con el paciente, la enfermedad, los medicamentos, el equipo asistencial y el sistema de salud 5,13 , destacando aquellos de tipo cognitivo, psicológico y social [14][15][16] . Diversos estudios plantean la necesidad de explorar y considerar diversas aristas de los contextos de vida de los usuarios de TARV a fin de hacer las adaptaciones pertinentes y apoyar la adherencia [17][18][19] . La relación sexo-género juega un rol fundamental determinando la forma en que ambos sexos explican y viven el diagnóstico de infección por VIH, así como la posición desde donde lo realizan 20 .…”

Informing the measurement of wellbeing among young people living with HIV in sub-Saharan Africa for policy evaluations: a mixed-methods systematic review

“…Drawing on our qualitative review findings together with the relational meaning model [60] and Goffman's accounts of stigma [133], internalised stigma may reduce wellbeing by lowering self-worth. In addition, externalised stigma encountered within social networks may reduce connectedness of self with family members and peers [102,112,134]. Together, these processes are likely to challenge self-acceptance.…”