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

BACKGROUND As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) age and manage challenges and competing demands of young adulthood, there is a need for new approaches to facilitate retention in longitudinal research and clinical care beyond in-person clinic visits. Sars-CoV-2, the novel coronavirus that causes COVID-19 disease, emerged in the United States in January 2020 and has underscored this need, as studies adapt to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults living with PHIV or PHEU. OBJECTIVE The objectives of this qualitative study were to: 1) describe participants' perceptions and use of social media and technology communication in their personal lives and in the context of participating in longitudinal pediatric HIV research, and 2) describe implications for the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV. METHODS We conducted 6 focus group discussions with 31 young adults living with PHEU and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol Up Protocol, a U.S.-based longitudinal cohort study of youth affected by HIV. RESULTS Participants' willingness to use social media platforms, phone, texting, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms. CONCLUSIONS Our findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. Pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research for optimal retention. CLINICALTRIAL