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Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults
Claire A Berman1, Deborah Kacanek2, Mindy Nichamin1
1Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, United States.
Insights
Young adults living with perinatal HIV (PHIV) or exposed but uninfected (PHEU) have varied communication preferences for research. Trusting relationships with staff are key for retention in HIV studies.
Area of Science:
- Pediatric HIV Research
- Adolescent Health
- Digital Health Communication
Background:
- Young adults with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) require adapted retention strategies in longitudinal studies.
- The COVID-19 pandemic highlighted the need for remote communication and data collection in HIV research.
- Limited data exists on communication preferences among young adults with PHIV or PHEU.
Purpose of the Study:
- To explore perceptions and use of social media and technology by young adults in their personal lives.
- To understand how technology and social media influence participation in longitudinal pediatric HIV research.
- To identify implications for communication and retention in HIV studies.
Main Methods:
- Qualitative study involving 6 focus groups (31 participants) and 13 in-depth interviews (13 participants).
- Participants included young adults living with PHIV and PHEU.
- Inquired about preferences for social media and digital technology within the Adolescent Master Protocol study.
Main Results:
- Willingness to use social media, calls, SMS, and video calls varied due to HIV stigma and disclosure fears.
- Positive impact of trusting relationships with clinical staff on participant engagement.
- Technology use preferences are influenced by concerns about privacy and stigma.
Conclusions:
- Pediatric HIV studies can improve communication with aging participants by adapting to new technologies.
- Flexible and tailored communication approaches are crucial for retaining young adults in HIV research.
- Building trust is essential for effective engagement with technology in HIV research.
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.
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