Designing a transition model for young adults living with HIV followed at University Teaching of Hospital of Kigali

Abstract

Background: With introduction of antiretroviral therapy (ART) worldwide, perinatally-infected children are surviving into adulthood, which has created the need to transition HIV-infected youth from pediatric clinics into adult care. Transition readiness involves patients, parents and providers by preparing adolescents and young adults well in advance for moving from pediatric to adult care and preparing adult services to receive them. There are currently no transition programs or protocols in place in any pediatric HIV clinics in Rwanda. In 2014 the pediatric HIV clinic at the University Teaching Hospital in Kigali (CHUK) planned to transfer adolescents and young adults to adult clinics, starting with the oldest. We aimed to assess the transition readiness of the young adults as they would be the first to be transitioned, and then develop a readiness assessment checklist and a transition model. Objective: This study aimed to assess transition readiness of HIV-infected young adults attending the pediatric HIV clinic of CHUK and to develop a transition protocol. Methods: This was a qualitative study. An individual, open-ended interview of young adults and health care providers was conducted by the investigator, lasting 20 minutes. Interviews were conducted in Kinyarwanda, audio taped, then transcribed. The transcripts were translated from Kinyarwanda into English by the investigator. We used the grounded theory approach for data analysis; transcripts were coded then codes were grouped into concepts, and then into categories. Results: We did interviews of 14 participants including 10 young adults and 4 health care providers. The mean age of the young adults was 21 years (range 20-24) and the majority was male. All 4 health care providers were female. We identified 4 major categories: self management behaviors, readiness to assume responsibility, barriers to transition, and transition readiness. Almost all young adults had gained knowledge about HIV but few were able to name their pills or dosage. Almost all young adults picked up their medications themselves. Identified barriers to transition were: fear of losing the relationship with healthcare providers, fear of new environment and fear of stigma in adult clinic. These results were used to develop a transition Conclusion: We found that even though young adults were taking responsibility in their health care management, they still need additional knowledge related to their drug regimen. We have identified potential barriers to transition that have to be addressed before the transition process is begun. The perceived readiness to transition care among the young adults was low, and this could be addressed by implementing a transition protocol. KEYWORDS: Young adults, Transition to adult clinic, HIV, readiness to transition care