Abstract:
Introduction: Adolescents living with HIV (ALHIV, ages 10–19) experience complex barriers to care engagement.
Challenges surrounding HIV status disclosure or non‑disclosure to adolescents may contribute to adolescent disen‑
gagement from HIV care or non‑adherence to ART. We performed a qualitative study to investigate the contribution
of disclosure challenges to adolescent disengagement from HIV care.
Methods: This was a qualitative study performed with disengaged ALHIV and their caregivers, and with healthcare
workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Inclusion
criteria for ALHIV were ≥1 visit within the 18 months prior to data collection at one of two clinical sites and nonat‑
tendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Analysis was
conducted by multiple independent coders, and narratives of disclosure and care disengagement were closely inter‑
rogated. Overarching themes were elucidated and summarized.
Results: Interviews were conducted with 42 disengaged ALHIV, 32 caregivers, and 28 HCW. ALHIV were average age
17.0 (range 12.9–20.9), and 95% indicated awareness of their HIV diagnosis. Issues surrounding disclosure to ALHIV
presented important barriers to HIV care engagement. Themes centered on delays in HIV status disclosure; hesitancy
and reluctance among caregivers to disclose; struggles for adolescents to cope with feelings of having been deceived
prior to full disclosure; pervasive HIV stigma internalized in school and community settings prior to disclosure; and
inadequate and unstructured support after disclosure, including for adolescent mental health burdens and for adoles‑
cent‑caregiver relationships and communication. Both HCW and caregivers described feeling inadequately prepared
to optimally handle disclosure and to manage challenges that may arise after disclosure.
