Claire Berman

HIV-related stigma is associated with negative effects on mental health and lower health-related quality of life in pediatric and young adult populations living with HIV. We reviewed literature on the impact of HIV-related stigma on suboptimal antiretroviral therapy (ART) adherence, engagement and retention in HIV care, and transition to adult HIV care in children, adolescents, and young adults living with HIV. PubMed and Embase^® were searched for publications reporting relevant data published from January 1, 2012, to April 13, 2023. The output was not a systematic review; it was a targeted literature review. Overall, 67 studies were selected for analysis based on pre-specified criteria (eg, quality). Most quantitative studies supported negative associations between HIV-related stigma and ART adherence (n = 8/11), engagement and retention in HIV care (n = 3/4), and transition to adult HIV care (n = 2/3) in pediatric and young adult populations living with HIV. Qualitative studies reported that stigma was a barrier to ART adherence (n = 26), engagement and retention in HIV care (n = 18), and transitioning to adult HIV care (n = 11). Prominent interview themes across all topics included anticipated stigma, enacted stigma, and fear of HIV status disclosure. Results reaffirm that HIV-related stigma is a significant barrier to ART adherence, engagement and retention in HIV care, and transition to adult HIV care among pediatric and young adult populations living with HIV, potentially impacting virologic suppression, onward transmission, and longer-term health. Additional interventional studies are needed to evaluate and reduce the impact of stigma in these important populations.

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.

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.