Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV.

摘要: Background: As young adults living with perinatal HIV (PHIV) or exposure but uninfected (PHEU) grow older and manage the challenges competing demands of adulthood, new approaches are needed to facilitate their retention in longitudinal research clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), novel virus that causes disease (COVID-19), emerged United States January 2020 has underscored this need; studies adapting remote communication data collection from participants. However, there limited on preferences among who PHIV PHEU. Objective: The objectives qualitative study were describe participants’ perceptions use social media technology personal lives context participating pediatric implications for purposes within a about HIV. Methods: We conducted 6 focus group discussions 31 13 in-depth interviews 7 PHEU. asked digital Adolescent Master Protocol, US-based cohort youth affected by HIV. Results: Participants’ willingness platforms, telephone calls, SMS text messages, video calls varied due fears stigma inadvertent disclosure. trusting relationships staff positively impacted these platforms. Conclusions: Our findings offer insight into how clinics can communicate participants as they age, even technologies platforms emerge replace old ones. For optimal retention, should consider offering flexible tailored options research.