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

Abstract

Background As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU. Objective The objectives of this qualitative study were to describe participants’ perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of 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 PHIV 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, a US-based longitudinal cohort study of youth affected by HIV. Results Participants’ willingness to use social media platforms, telephone calls, SMS text messages, 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. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research.

Brief Report: Supporting Access to HIV Care for Children and Youth During the COVID-19 Pandemic With Telemedicine and Rideshare

“…Despite the high proportion of completed telemedicine visits (83%) during the pandemic, we did not observe the low no-show rates for telemedicine (4%-6%), as reported among adult infectious diseases, adult HIV, and general adolescent clinics in the United States. 14,15 This may be attributed to differences in logistical and technological barriers associated with the use of telemedicine, 5,16,17 patient privacy concerns, 7,18 and differences in baseline patterns of engagement in care. More than half of scheduled visits during the pandemic in our study were telemedicine visits, likely due to the ease of scheduling and attending those visits compared with inperson visits.…”

“… 4 Telemedicine reduced the need for in-person visits and transportation 5 , 6 ; however, it required patients to have access to technology, private space, and the ability to complete laboratory testing. Youth living with HIV expressed privacy concerns when using telemedicine, 7 highlighting that flexibility and tailored options must be considered for this population. In addition, the need for laboratory testing must be addressed with options such as supporting transportation and facilitating access to conveniently located testing sites to ensure timely laboratory testing.…”