Perspectives About Transition Readiness Among Adolescents and Young People Living With Perinatally Acquired HIV in Rural, Southwestern Uganda: A Qualitative Study

Abstract

Despite the availability of antiretroviral therapy, treatment outcomes are worse among adolescents and young adults living with perinatally acquired HIV (AYLPHIV). These disparities are magnified during the transition from pediatric to adult-based HIV care. We conducted in-depth interviews with AYLPHIV aged 15-24 years (n 5 30), their caregivers (n 5 10), and health care providers (n 5 10). All participants provided written assent and/or informed consent to enroll. Thematic content analysis was used to identify and analyze themes relevant to transition readiness. We grouped perspectives on transition readiness into 4 themes: preparation for transition, communication between stakeholders, social support, and timing of transition. AYLPHIV in sub-Saharan Africa who are facing a transition to adult HIV care should be equipped with relevant information about their illness, self-advocacy skills, and support from caregivers and health care providers to remain engaged in HIV care.

A qualitative analysis of self-management needs of adolescents and young adults living with perinatally acquired HIV in rural, southwestern Uganda

“…Having a stable source of income has been associated with transition readiness among AYLPHIV [ 66 ] while economic empowerment has been associated with improved HIV treatment outcomes among AYLPHIV [ 17 , 67 ]. Finally, the informational support needed entails comprehensive knowledge of HIV, HIV transmission, and the role of ART adherence [ 68 , 69 ], as well as sexual and reproductive health [ 70 , 71 ].…”

“…Empowerment was viewed by participants as a necessary precondition for successfully transitioning to HIV care. Prior work has linked better outcomes to self-advocacy [51,69,[71][72][73][74][75], HIV status disclosure [11,66,[76][77][78][79][80], interpersonal skills [81][82][83], and self-care [50,[84][85][86]. AYPLHIV should be empowered with skills to enable them participate effectively in their care including making decisions related to their care, collaborating effectively with health care providers as they grow towards independence and assuming responsibility for their own HIV care [68].…”

Navigating antiretroviral adherence in boarding secondary schools in Nairobi, Kenya: A qualitative study of adolescents living with HIV, their caregivers and school nurses

“…Our discussions showed that successful transition included caregivers engaging adolescents in the process, including obtaining their assent to disclose their HIV status to school leadership, and caregivers actively assuming the role of transition-facilitators, by linking adolescents to school nurses. This process parallels some of the work already being done in Africa to support youth living with HIV as they transition to adult HIV care, where best practices include equipping adolescents with relevant information about their condition, self-advocacy skills, and support from caregivers [ 39 , 40 ].…”

Transición del adolescente sano al servicio médico de adultos

“…Para asegurar una transición exitosa, es indispensable el cumplimiento de cada uno de los pasos anteriormente citados, con el objetivo de lograr un concepto de salud integral del adolescente (35). Gran parte de la literatura disponible describe el proceso de transición en patologías específicas (diabetes, virus de inmunodeficiencia humana, enfermedad reumatológica, enfermedades mentales entre otras) y muestran la experiencia de cada grupo enfocado e individualizado a cada enfermedad, cada una de las patologías muestran barreras específicas que se deben afrontar (36)(37)(38). Esto es un paso crucial y de gran importancia para la vida del adolescente (39).…”