“I feel like a guest on the other side”: youth-identified challenges and solutions to transitioning from adolescent to adult HIV services in Western Kenya
AIDS Care
Authors: Dorothy I. Mangale, Jayne Lewis-Kulzer, Zachary Arochi Kwena, Eliud Akama, Harriet Fridah Adhiambo, Sarah Iguna, Oketch Bertha Akinyi, Evelyne Nyandieka, Eunice Omondi, Felix Ochieng, Okoth Clinton Owino, Sophia Goldin, Bukusi Elizabeth Anne, Elvin Geng, Laura K. Beres & Lisa L. Abuogi
This study explored why many adolescents and young adults living with HIV struggle when they move from adolescent HIV clinics to adult HIV services, a period when up to half of youth lose contact with care. Losing engagement at this stage can lead to serious health consequences, including treatment failure. To better understand what young people experience during this transition and what they believe would help, researchers conducted focus group discussions with 33 youth in Kisumu County, Kenya, and then held a four‑day human‑centered design workshop with a subset of participants and peer navigators. The goal was to hear directly from young people about the challenges they face and the solutions they think would make the transition easier.
Participants were between 14 and 24 years old, most of them female, and came from diverse backgrounds. They described a range of difficulties that made the transition to adult care stressful and confusing. Many said they did not understand the transition process because providers rarely explained it clearly. They felt unprepared for the shift, which often involved moving to a larger, more complex adult clinic where the flow of services was unfamiliar and overwhelming. Privacy was another major concern; young people worried about being recognized or judged in adult clinics, which heightened fears of stigma. They also described strained or uncomfortable interactions with adult‑clinic providers, who they felt were less approachable than staff in adolescent clinics. Losing the supportive peer relationships they had built in youth clinics added to their anxiety.
During the workshop, adolescents and young adults emphasized that improving the transition process should be a priority. They suggested starting transition planning earlier so they would have time to adjust and ask questions. They also recommended creating peer‑led transition support groups, where youth who have already moved to adult care can guide others through the process. Many felt that ongoing, age‑appropriate health education during clinic visits would help them feel more confident managing their care. They also highlighted the importance of emotional support, especially around accepting their HIV status, which they saw as essential for staying engaged in treatment.
Overall, the study shows that young people face challenges at multiple levels—personal, provider‑related, and structural—when moving from adolescent to adult HIV care. The solutions they proposed reflect their desire for clearer communication, stronger peer support, and a more youth‑friendly approach within adult clinics. These insights can help shape interventions that improve treatment adherence and long‑term engagement during this critical period of their lives.