Advancing knowledge on factors that promote or impede engagement along the HIV care continuum over time: A longitudinal mixed methods study of Black and Latinx youth/emerging adults living with HIV
PROJECT SUMMARY: Young people living with HIV (LWH) in the developmental periods from adolescence to
emerging adulthood (ages 16-28 years), which we refer to as “youth and emerging adults” (YEA), have the
lowest rates of engagement along the HIV care continuum (HCC) of any age group. This poor engagement is
most pronounced for African American/Black and Latinx YEA-LWH, including sexual/genderminorities, those
who use alcohol/drugs, and individuals from low socioeconomic status backgrounds. Yet, our knowledge of
factors that promote or impede engagement along the HCC, and how they operate and interplay over time, is
insufficient, for both limited occurrence behaviors (e.g., HIV care appointments) and repeated occurrence
behaviors (e.g., ART adherence). These gaps limit innovations to policy and health services. The proposed
prospective longitudinal study uses mixed methods and focuses on African American/Black and Latinx YEA-
LWH both with and without viral suppression. The study uses quantitative, qualitative, biomarker (HIV viral
load, drug use), and ecological momentary assessment approaches to uncover, describe, and better
understand factors contributing to trajectories of engagement along the HCC over time, with precision,
including from YEA-LWH’s perspectives. The study is grounded in Social Action Theory, a comprehensive
social-cognitive/ecological model that allows for examination of changes in contextual influences (e.g., action
contexts such as racism and homophobia; self-regulatory resources such as substance use), self-change
processes (e.g., social interaction processes including social networks; motivational appraisals), and action
states (e.g., attendance at HIV care appointments, substance use treatment [as needed], ART re-initiation).
The study’s primary outcome is HIV viral suppression (VS). Two interconnected aims are proposed: to
describe trajectories of engagement along the HCC (Aim 1), and guided by Social Action Theory, to identify,
describe, and understand the contextual influences, self-change processes, and action states that impede or
support the behaviors that comprise engagement along the HCC over time, including YEA-LWH’s
perspectives on these factors (Aim 2). A Youth Advisory Board will be joined by scientific advisors to develop
actionable recommendations based on study findings, which will be disseminated. Participants (N=270, half
with HIV VS and half non-suppressed at enrollment) will be diverse African American/Black or Latinx
behaviorally infected YEA-LWH recruited in New York City and Newark, NJ using a proven hybrid strategy. We
will follow participants prospectively for 18 months using mixed methods, combining baseline and follow-up
data (N ≈ 810 viral load observations), to assess the multifaceted domains expected to facilitate or impede
engagement along the HCC, and YEA-LWH’s perspectives on their causes and meanings. The research team
is expert in longitudinal mixed methods studies, HCC research, and AABL YEA. The proposed study aligns
with NIH priorities and will advance solutions for this serious public health problem.
Public Health Relevance Statement
Project Narrative: Young people living with HIV in adolescence through emerging adulthood (ages 16-28
years) have the lowest rates of regular engagement in HIV care and adherence to HIV medications of any age
group, with Black and Latinx individuals experiencing the greatest barriers to favorable HIV health outcomes.
To provide a detailed understanding of the factors that promote or impede HIV management in this group, we
will follow Black and Latinx youth/emerging adults living with HIV, half with optimal HIV health outcomes at
enrollment (undetectable HIV viral load) and half without, for 18 months. Participants will engage in structured
assessments, in-depth qualitative interviews, real-time ecological momentary assessments in two-week bursts,
and biological tests (HIV viral load tests, drug tests), and a Youth Advisory Board comprised of youth living with
HIV will help interpret findings in order to inform new policies, health care service practices, and interventions.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AdherenceAdolescenceAdultAfrican AmericanAgeAlcohol consumptionAppointmentBehaviorBehavioralBiological MarkersBiological TestingBiometryBlack PopulationsBlack raceCaringCognitiveContinuity of Patient CareDataDevelopmentDiagnosisDrug usageEcological momentary assessmentEnrollmentEpidemicFamily RelationshipHIVHIV riskHealthHealth ServicesHealthcareHomophobiaHybridsIndividualInterventionInterviewKnowledgeLatinxLatinx populationLiteratureLongitudinal StudiesMedicalMental HealthMethodsMinorityModelingMotivationNew York CityOutcomeParticipantPersonsPharmaceutical PreparationsPoliciesPopulationProcessPublic HealthRecommendationReportingResearchResourcesRiskSamplingServicesSexual and GenderMinoritiesSocial InteractionSocial NetworkStructureTestingTimeUnited StatesUnited States National Institutes of HealthViralViral Load resultVulnerable PopulationsYouthage groupantiretroviral therapydesigndrug testingemerging adultemerging adulthoodexperiencefollow-uphealth care servicehealth care settingshigh riskinnovationlongitudinal designlongitudinal, prospective studylow socioeconomic statusmicrosystemspeerpolicy recommendationprimary outcomeprospectiveprotective factorspsychologicracismrecruitsecondary outcomesocialsubstance usesubstance use treatmenttheoriestherapy adherence
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