“Who am I going to stay with? Who will accept me?”:family-leveldomainsinfluencingHIVcareengagementamongdisengagedadolescentsinKenya

Abstract

Introduction:Adolescents living with HIV (ALHIV, ages 10–19) have developmentally specific needs in care, and have lowerretention compared to other age groups. Family-level contexts may be critical to adolescent HIV outcomes, but have oftenbeen overlooked. We investigated family-level factors underlying disengagement and supporting re-engagement among ado-lescentsdisengagedfromHIVcare.Methods:Semi-structured interviews were performed with 42 disengaged ALHIV, 32 of their caregivers and 28 healthcareworkers(HCW)intheAcademicModelProvidingAccesstoHealthcare(AMPATH)programinwesternKenya,from2018to2020. Disengaged ALHIV had≥1 visit within the 18 months prior to data collection at one of two sites and nonattendance≥60daysfollowingtheirlastscheduledappointment.HCWwererecruitedfrom10clinics.Transcriptswereanalysedthroughthematic analysis. A conceptual model for family-level domains influencing adolescent HIV care engagement was developedfromthesethemes.Results:Family-level factors emerged as central to disengagement. ALHIV-particularly those orphaned by the loss of one orboth parents-experienced challenges when new caregivers or unstable living situations limited support for HIV care. Thesechallenges were compounded by anticipated stigma; resultant non-disclosure of HIV status to household members; enactedstigmainthehousehold,withoverwhelmingeffectsonadolescents;orexperiencesofmultipleformsoftrauma,whichunder-minedHIVcareengagement.Somecaregiverslackedfinancesorsocialsupporttofacilitatecare.Othersdidnotfeelequippedto support adolescent engagement or adherence. Regarding facilitators to re-engagement, participants described roles forhousehold disclosure; and solidarity from caregivers, especially those also living with HIV. Family-level domains influencingHIV care engagement were conceptualized as follows: (1) adolescent living situation and contexts; (2) household materialresources or poverty; (3) caregiver capacities and skills to support adolescent HIV care; and (4) HIV stigma or solidarity atthehouseholdlevel.Conclusions:Family-level factors are integral to retention in care for ALHIV. The conceptual model developed in this studyforfamily-levelinfluencesoncareengagementmayinformholisticapproachestopromotehealthyoutcomesforALHIV.Devel-opmentally appropriate interventions targeting household relationships, disclosure, HIV stigma reduction, HIV care skills andresources,andeconomicempowermentmaypromoteadolescentengagementinHIVcare.