HIV Care Through Their Eyes: Navigating HIV Services and ART Adherence Among Adolescents and Their Caregivers in...

Adolescents living with HIV (ALHIV) face unique psychosocial and structural challenges affecting ART adherence and engagement in care. Despite Zambia's expansion of adolescent-friendly HIV services, adolescents continue to experience poorer adherence and treatment outcomes than adults, including lower viral suppression and retention in care and limited understanding remains around the experiences of ALHIV and their caregivers. This study explored multilevel factors influencing ART adherence in Lusaka district from the perspectives of ALHIV and their caregivers.

We conducted an exploratory qualitative study on psychosocial, behavioral, and structural factors influencing ART adherence and experiences of HIV services among ALHIV in Lusaka, Zambia. Between February and July 2025, 35 in-depth interviews (20 ALHIV who were already aware of their HIV status and engaged in long-term care and 15 caregivers) were conducted across six health facilities (four PHC and two first-level facilities). Interviews were held in English or Nyanja, audio-recorded, transcribed, and analyzed using ATLAS.ti v24. A hybrid inductive-deductive approach, informed by the socioecological model, guided coding. Themes were organized in an analytical matrix showing multilevel influences on adherence, including emotional burden, stigma, support systems, and structural barriers. Trustworthiness was ensured through triangulation, peer debriefing, and iterative codebook development.

The themes identified spanned intrapersonal (individual), interpersonal, organizational/institutional, community, and structural/policy-level factors influencing ART adherence, alongside participant-generated cross-cutting recommendations to strengthen adolescent HIV service delivery. Many adolescents struggled with stigma, emotional distress, and challenges of consistent medication adherence, while others adapted through acceptance, spirituality, and counseling. Supportive relationships with family, peers, and healthcare workers fostered adherence, but stigma, school challenges, inconsistent caregiving, and limited privacy remained significant barriers. Socioeconomic issues, such as transport costs, hindered treatment continuity. Helpful strategies included routine-building, reminders, and increased health literacy. Participants recommended improving adolescent-friendly services by integrating mental health support, strengthening provider communication, expanding peer networks, and reactivating support groups to better support ART adherence among ALHIV.

Addressing psychological, social, service delivery, and structural barriers such as coordination between schools and the health system is vital to improving ART adherence among ALHIV in Zambia. A multilevel approach is needed to support sustainable treatment outcomes.