Lessons Learned From Conducting Community-Based Research on HIV Prevention With Youth During COVID-19.

Mitigating HIV burden among Black youth requires true community engagement. This brief report identifies challenges, strategies, and lessons learned from transitioning our three-phased, community-engaged HIV prevention project with Black youth to a remote format during COVID-19. The project involved (1) building a community-academic partnership on youth sexual health, (2) participatory youth workshops, and (3) youth surveys and interviews about HIV prevention. Feedback from community-academic partnership, pile sorting themes, and preliminary qualitative analyses guided this report. Challenges included a disruption to in-person engagement while strategies included relying heavily on pre-existing partnerships to recruit youth for interviews. We learned that pre-existing community engagement was essential for completing phase three remotely. More education is needed to support Pre-Exposure Prophylaxis (PrEP) awareness for HIV prevention and there is a need to address structural barriers to healthcare engagement such as community violence and mental illness. Community-engaged HIV research focused on youth can adapt if anchored in community relationships. Future studies must work to more fully center youth's voices and address the structural issues that may inhibit them from engaging in HIV prevention.

Tough Talks COVID-19 Digital Health Intervention for Vaccine Hesitancy Among Black Young Adults: Protocol for a Hybrid Type 1 Effectiveness Implementation Randomized Controlled Trial.

BACKGROUND: Interventions for increasing the uptake of COVID-19 vaccination among Black young adults are central to ending the pandemic. Black young adults experience harms from structural forces, such as racism and stigma, that reduce receptivity to traditional public health messaging due to skepticism and distrust. As such, Black young adults continue to represent a priority population on which to focus efforts for promoting COVID-19 vaccine uptake. OBJECTIVE: In aims 1 and 2, the Tough Talks digital health intervention for HIV disclosure will be adapted to address COVID-19 vaccine hesitancy and tailored to the experiences of Black young adults in the southern United States (Tough Talks for COVID-19). In aim 3, the newly adapted Tough Talks for COVID-19 digital health intervention will be tested across the following three southern states: Alabama, Georgia, and North Carolina. METHODS: Our innovative digital health intervention study will include qualitative and quantitative assessments. A unique combination of methodological techniques, including web-based surveys, choose-your-own-adventures, digital storytelling, user acceptability testing, and community-based participatory approaches, will culminate in a 2-arm hybrid type 1 effectiveness implementation randomized controlled trial, wherein participants will be randomized to the Tough Talks for COVID-19 intervention arm or a standard-of-care control condition (N=360). Logistic regression will be used to determine the effect of the treatment arm on the probability of vaccination uptake (primary COVID-19 vaccine series or recommended boosters). Concurrently, the inner and outer contexts of implementation will be ascertained and catalogued to inform future scale-up. Florida State University's institutional review board approved the study (STUDY00003617). RESULTS: Our study was funded at the end of April 2021. Aim 1 data collection concluded in early 2022. The entire study is expected to conclude in January 2025. CONCLUSIONS: If effective, our digital health intervention will be poised for broad, rapid dissemination to reduce COVID-19 mortality among unvaccinated Black young adults in the southern United States. Our findings will have the potential to inform efforts that seek to address medical mistrust through participatory approaches. The lessons learned from the conduct of our study could be instrumental in improving health care engagement among Black young adults for several critical areas that disproportionately harm this community, such as tobacco control and diabetes prevention. TRIAL REGISTRATION: ClinicalTrials.gov NCT05490329; https://clinicaltrials.gov/ct2/show/NCT05490329. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41240.

Lessons Learned in Centering Youth Voices in HIV Prevention: The Adolescent Health Working Group.

BACKGROUND: There remains critical need for community-based approaches to HIV prevention which center youth voices and needs. OBJECTIVES: We established an adolescent health working group (AHWG) to convene youth, parents, providers, and advocates in agenda-setting for interventions to increase pre-exposure prophylaxis uptake in Durham. METHODS: Our three study phases included six AHWG meetings from 2019 to 2020, youth-only meetings guided by a participatory engagement framework (Youth Generate and Organize), and interviews (n=13) and surveys with youth in the community (N=87). We also developed materials such as an AHWG mission statement, a list of themes and informational needs, and documented strategies about pivoting the project during the onset of the COVID-19 global pandemic.Lessons Learned/Conclusions: Engaging adults in youth-focused HIV prevention differs greatly to engaging youth themselves. Creating spaces to promote adolescent sexual Health requires trust building, breaking down sensitivities and stigma to, and flexibility to navigate both virtual and in-person spaces to do so.

Using narratives to inform the development of a digital health intervention related to COVID-19 vaccination in Black young adults in Georgia, North Carolina and Alabama.

Interactive stories are a relatively newer form of storytelling with great potential to correct misinformation while increasing self-efficacy, which is crucial to vaccine acceptance. To address COVID-19 vaccine hesitancy and medical mistrust in young Black adults (BYA), we sought to adapt a pre-existing application ("app"; Tough Talks) designed to address HIV disclosure decision-making through choose-your-own adventure (CYOA) narratives and other activities. The adapted app (Tough Talks - COVID) uses a similar approach to situate COVID-19 vaccination decision-making within social contexts and to encourage greater deliberation about decisions. To inform content for the CYOA narratives, we conducted an online survey that was used to elicit the behavioral, cognitive, and environmental determinants influencing COVID-19 vaccine hesitancy among 150 BYA (ages 18-29) in Georgia, Alabama, and North Carolina. The survey included scenario questions that were developed with input from a youth advisory board to understand responses to peer and family influences. In two scenarios that involved discussions with family and friends about vaccination status, most respondents chose to be honest about their vaccination status. However, vaccinated individuals perceived more social pressure and stigma about not being vaccinated than unvaccinated respondents who were not as motivated by social pressure. Personal choice/agency in the face of perceived vaccine risks was a more common theme for unvaccinated respondents. Results suggest that relying on changing social norms alone may not impact barriers to vaccination in unvaccinated young adults without also addressing other barriers to vaccination such as concerns about autonomy and vaccine safety. Based on these findings, CYOA narratives in the app were adapted to include discussions with family and friends but also to touch on themes of personal choice as well as other topics that influence behaviors besides norms such as safety, side effects, and risk of COVID-19 in an evolving pandemic.

Digital Storytelling Methods to Empower Young Black Adults in COVID-19 Vaccination Decision-Making: Feasibility Study and Demonstration.

BACKGROUND: Despite high rates of novel COVID-19, acceptance of COVID-19 vaccination is low among Black adults. In response, we developed a digital health intervention (Tough Talks-COVID) that includes digital stories created in a workshop we held with young Black adults. OBJECTIVE: Our formative research using digital storytelling workshops asked 3 research questions: (1) What issues did participants have in conceptualizing their stories, and what themes emerged from the stories they created? (2) What issues did participants have related to production techniques, and which techniques were utilized in stories? and (3) Overall, how did participants evaluate their workshop experience? METHODS: Participants were workshop-eligible if they were vaccine-accepting based on a baseline survey fielded in late 2021. Final participants (N=11) completed a consent process, all 3 workshops, and a media release form for their digital story. The first 2 workshops provided background information and hands-on digital storytelling skills from pre- to postproduction. The third workshop served as a screening and feedback session for participants' final videos. Qualitative and quantitative feedback elements were incorporated into all 3 sessions. RESULTS: Digital stories addressed one or more of 4 broad themes: (1) COVID-19 vulnerability, (2) community connections, (3) addressing vaccine hesitancy, and (4) countering vaccine misinformation. Participants incorporated an array of technical approaches, including unique creative elements such as cartoon images and instant messaging tools to convey social interactions around COVID-19 decision-making. Most (9/11, 82%) strongly agreed the digital storytelling workshops were delivered as expected; 10 of 11 agreed (n=5) or strongly agreed (n=5) that they had some ideas about what story to tell by the end of the first workshop, and most (8/11, 73%) strongly agreed they had narrowed down their ideas by workshop two. Of the participants, 9 felt they would very likely (n=6) or likely (n=3) use digital storytelling techniques for personal use in the future, and even more were very likely (n=7) to use the techniques for professional use. CONCLUSIONS: Our study is one of the first to incorporate digital storytelling as a central component to a digital health intervention and the only one to do so with exclusive focus on young Black adults. Our emphasis on digital storytelling was shown to be highly acceptable. Similar approaches, including careful consideration of the ethical challenges of community-based participatory approaches, are applicable to other populations experiencing both COVID-19 inequities and marginalization, such as other age demographics and people of color.

Exploring intersectional stigma and COVID-19 impact on human immunodeficiency virus service provision for African Americans in a Southern city.

AIMS/OBJECTIVES: Through interviews with clinical service providers, we explored stigma's impact on HIV service provision for African Americans during COVID-19. BACKGROUND: African Americans experience disproportionate rates of HIV and COVID-19. We explored COVID-19's impact on HIV services for African American adults in a Southern city. DESIGN: The study was qualitative and observational. METHODS: Key informant interviews were conducted (n = 11) across two healthcare centres and two community-based organisations and thematically analysed using phenomenological approaches by two coders. Interviews explored pre- and post-COVID-19 service provision and parallels between COVID-19 and HIV, particularly as related to stigma. The COREQ checklist was utilised to ensure research quality. RESULTS: According to the providers interviewed, all providers offered HIV prevention/treatment, but PrEP and preventive services diminished greatly early in the COVID-19 pandemic. Successful transition to telehealth depended on existing telehealth use. Challenges exacerbated by COVID-19 included food/housing insecurity and physical distancing constraints. Clients' COVID-19 informational needs shifted from concerns to vaccine requests over time. Interviewees stated HIV and COVID-19 both carry 'risk taking'; however, HIV risk was more physically intimate than COVID-19. Notably, some providers used stigmatising language referring to clients with HIV/COVID and omitted person-centred language. CONCLUSIONS: Findings suggest need to address challenges in telehealth to improve client experiences now and for future pandemics. More research is needed to examine intersectional stigmatisation of COVID-19 and HIV for African Americans to design person-centred counselling interventions. RELEVANCE TO CLINICAL PRACTICE: Results demonstrate need for provider training to reframe stigma discussions using client centeredness, educating African Americans on HIV and COVID-19 prevention, and coordination with local organisations to address multiple care needs. PATIENT/PUBLIC CONTRIBUTION: This research highlights needs of clients based on the views of healthcare providers caring for predominantly African American communities in a Southern city. However, no patients, service users, caregivers or members of the public were directly involved in this study.

'The Woman Gives': Exploring gender and relationship factors in HIV advance care planning among African American caregivers.

AIMS AND OBJECTIVE: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. BACKGROUND: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. DESIGN: The study was mixed methods and observational. METHODS: Participants completed self-report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. RESULTS: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. CONCLUSIONS: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender-specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. RELEVANCE TO CLINICAL PRACTICE: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life-sustaining treatments at end-of-life. ACP is crucial now more than ever, as COVID-19 complicates care for older adults with HIV at high risk of complications.