ABSTRACT
Purpose: Adolescents/young adults (AYA) from racial/ethnic communities have high rates of HIV but little access to biomedical research, due to complexities around consent. Requirement of parental consent for participation in biomedical research is protective and strongly supported by parents, but in biomedical HIV prevention, minors are less likely to participate in research because of concerns about disclosure. Public deliberation (PD) is a process to obtain community input on complex policy issues, by bringing together AYA and adults, who have an investment in an issue, but with potentially opposing views, to provide education, clarify values, and facilitate discussion, reflection, and recommendations. To inform institutional review boards, institutions, and investigators, PDs were held with the goal of obtaining community perspectives and recommendations on minor consent for biomedical HIV prevention research from communities affected by youth HIV. Due to COVID-19 pandemic restrictions, we used an online format and conducted PDs across four evenings. We then conducted post-deliberation interviews to describe participants' experiences in the online PD. Methods: As part of an IRB approved PD, we conducted semi-structured interviews with youth and adult community members who had participated in the deliberations, held in Tampa and Baltimore. The interviews, which were conducted over Zoom, queried deliberants about their experiences voicing their perspectives, their comfort level, their degree of trust in the deliberation process, and ideas for how to better engage future deliberants. Interviews were audio-recorded, transcribed, and field notes were generated. Data were analyzed using thematic analysis. Results: We interviewed 13 community members: seven from Tampa (African American=3, White=3, Latinax=1;AYA=2) and six from Baltimore (African American=6;AYA=1). Facilitators: Deliberants from both communities indicated that personal connections were important for building consensus and understanding. When other participants shared personal stories and perspectives, deliberants were more receptive to hearing and accepting new ideas and opinions that differed from their own. Challenges: Tampa deliberants reported that they preferred an online deliberation because it helped overcome practical barriers to in-person deliberations, such as access to transportation and long commutes. Baltimore participants indicated they would have preferred in-person interactions to build trust, increase comfort, and augment engagement. Participants from both communities discussed distrust in research due to the historical legacy of racism in research and medicine. Due to this legacy, they reported that distrust influenced their views of minor-self-consent and impacted the deliberation process around building consensus. For example, concerns about coercion of minor human subjects influenced their views on minor consent. Recommendations: Participants recommend that strategies be developed to increase engagement in the virtual space. These strategies include use of (a) breakout sessions to increase comfort with sharing;(b) personal storytelling and reviewing group agreements to increase trust, (c) early polling activities to ensure engagement, (d) and asking adults to provide space for youth to voice their perspectives. Conclusions: While online public deliberation on sensitive topics with a vulnerable population is possible, it is important for researchers to focus on providing a safe environment, to acknowledge historical racism in research, and to use methods to maximally engage participants. Sources of Support: PCORI.
ABSTRACT
Purpose: Youth in foster care have high rates of adverse sexual health outcomes and are important targets for evidence-based sex education. With the COVID-19 pandemic, sexual health programming was moved to a virtual format. However, few data existed to guide this transition. While it lowers expenses and can potentially broaden geographic reach, it is unclear if virtual programming meets the needs of youth in foster care or other vulnerable populations. We conducted a mixed-methods analysis comparing the reach, implementation, and effectiveness of virtual vs in-person sex education for youth in foster care before and during the COVID-19 pandemic. Methods: Indiana Proud and Connected Teens (IN-PACT) provides evidenced-based sex education programs to system-involved youth. The data used in this study focused exclusively on foster-care programming and includes attendance records, facilitator session reviews (n=64) from 2020-2021 virtual programs, and youth surveys from 2018-2020 in-person (n=965) and virtual (n=50) programs. Reach was measured using youth baseline survey demographics and sexual behaviors;implementation by free responses from facilitators on challenges and adaptation for virtual teaching;and effectiveness by attendance records and youth behavior intention on follow-up surveys. Results: Reach: Youth demographic diversity was maintained for virtual programming in ethnicity, race, sex, and sexual orientation. However, youth in virtual programs had lower rates of self-reported risk behaviors including lower rates of involvement with juvenile justice (35.0% vs 59.4%, p<0.01) to have ever had sex (44.4% vs 78.8%, p<0.001) or contributed to a pregnancy (4.4% vs 23.4%, p<0.05). And though not statistically significant, virtual youth reported higher rates of condom use (44.4% vs 30.4%, p=0.371) and lower rates of substance use before sex in the past 3 months (15.6% vs 28.5%, p=0.114) as compared to in-person youth. Implementation: Technical challenges included connection difficulties and learning curves to using Zoom. Virtual facilitators incorporated more technology than they did in-person by playing videos on complicated topics such as conception and STIs. In terms of curriculum, hands-on condom demonstrations were changed to facilitator-run experiments such as having youth use socks at home to simulate condoms on their arms. Breakout rooms were utilized to maintain small group work but were cumbersome. Relational challenges included awkward silences, disengagement, and a decrease in group trust due to cameras being turned off during sensitive topics and less connection between youth and facilitators. Effectiveness: Attendance records show that fewer virtual youth completed 100% of programming, as compared to in-person youth (23% vs 54%). More virtual youth answered yes to the question "As a result of this program, will you abstain from sex for the next three months?” as compared to in-person youth (55% vs 45%, p=0.462). However, virtual youth were significantly less likely to have baseline sexual experience. Conclusions: In-person sexual health programming had a wider reach, experienced fewer implementation challenges, and was potentially more effective than virtual programming for youth in foster care. If virtual programming becomes necessary again, sex educators and researchers can use these data to redesign virtual programming that maximizes reach, implementation, and effectiveness. Sources of Support: HHS 90AK0041-02-00 to Health Care Education and Training Inc.