Lessons Learned in Engaging Adolescents and Young Adults to End the US HIV Epidemic

Abstract

Background:

Adolescents and young adults (AYA) in the United States are disproportionately affected by HIV. Few interventions are designed to reduce new HIV infections for AYA populations or take AYA’s developmental state into consideration.

Setting:

Ending the HIV Epidemic in the US (EHE) priority areas in California, Florida, Illinois, Massachusetts, and North Carolina.

Methods:

Thematic synthesis of 5 EHE projects was completed. Methodologic commonalities were identified and summarized across projects to identify key lessons learned.

Results:

Engaging methods used by and accessible to AYA were central to study recruitment, and to the dissemination of health information for educational purposes. Lessons learned included use of social media and other creative methods for recruitment, retention, and dissemination of study activities; engaging AYA virtually and face-to-face; and ensuring equitable, timely monetary compensation and meaningful benefits to AYA participants.

Conclusions:

Researchers and public health officials should incorporate AYA developmental context and experiences throughout the research and implementation process. This necessitates community and AYA-engaged research, intervention development, implementation, and dissemination. Future directions include expanding these efforts to communities outside of EHE areas and outside the United States, and ensuring that HIV research and interventions focus not just on individual AYA, but also on the systems and people that bear on their health and well-being (eg, health care providers, supportive adults, schools, laws, and policies).

INTRODUCTION

Adolescents and young adults (AYAs) in the United States are disproportionately affected by HIV, with approximately 1 in 5 new diagnoses in 2022 occurring among 13- to 24-year olds.¹ Most of these diagnoses are concentrated in Black, Latine, and sexual and gender minority (SGM) AYA (eg, transgender women; gay, bisexual, and queer men who have sex with men).¹ Between 2018 and 2021, HIV diagnoses decreased among AYA (from 7882 cases to 7010 cases) and overall (from 37,217 cases to 35,724 cases). However, in 2022 there was a slight increase in cases, which the Centers for Disease Control and Prevention attributed to the “post-pandemic effects on the US public health system.”¹ As a result, the trajectory is unlikely to reach the goal of a 90% reduction in new HIV diagnoses by 2030, as outlined in the Ending the HIV Epidemic in the US (EHE) initiative.² In addition, there remain relatively few interventions designed with and for the AYA populations at high risk for HIV acquisition, and existing interventions that are focused on adults fail to consider the contexts of youth development that might affect their participation or how they experience and benefit from these interventions.^3,4 Immediate changes to how we approach national HIV prevention efforts are needed among AYA to curb the increase in new diagnoses.

In epidemiologic reports, AYA are often grouped together as 13- to 24-year olds, with few areas that disaggregate minors from legal adults (eg, Los Angeles County surveillance data as one example). However, age grouping may obscure the vast and rapid developmental changes that occur in the transitions from childhood to adolescence, and adolescence to young adulthood. This developmental context has an important bearing on AYA’s capacity and opportunity to engage in HIV research and protective behaviors related to sexual health and HIV prevention, testing, and treatment. For instance, school-based sex and HIV prevention education in the United States is inadequate,⁵ and most adult caregivers are poorly equipped to address these topics and support youth’s skills in this area.^6,7 At the same time, AYA are typically exploring sex and substances that, though normative, may increase vulnerability to HIV; developing their sense of sexual orientation and gender identity in the absence of SGM-inclusive and affirming health care and education; and increasingly desiring more autonomy and self-determination that can feel at odds with their dependence on caregivers for financial support, housing, and health insurance.^8,9 Taken together, these factors contribute to variability in engagement with HIV prevention, testing, treatment, and research.

On top of these developmental considerations, legal rights of AYA can differ by age and location. All states have mature minor laws that enable adolescents younger than 18 years old to self-consent to certain types of health care that they may not otherwise access because of stigma or fear of punishment (eg, sexual and reproductive health care, HIV services, mental health, and substance use treatment). As one example, some state laws make explicit that minors can access HIV services without their legal guardians’ permission, whereas most others only specify HIV testing and treatment; yet interpretations of these laws and how they apply to, for example, AYA access to HIV pre-exposure prophylaxis (PrEP) prescriptions as a form of prevention may vary by provider or clinic.^10,11 Research suggests that adolescents are largely unaware of their health care rights and assume their legal guardians must consent for them.¹²

In terms of research and public health interventions to reduce HIV among AYA, there are important barriers to address and ethical issues to consider. The first, as mentioned earlier, is the tendency for research to focus on developing and establishing interventions for adults before applying them to youth. This approach contributes to a lag in development and implementation of evidence-based interventions focused on AYA.¹³ Instead, designing interventions with and for AYA from the beginning—including collaboratively adapting existing, effective interventions with AYA—can ensure these interventions address AYA’s social, cultural, and developmental needs and preferences. The second barrier is the “purview paradox,” whereby health care providers and other individuals (eg, health educators, caregivers) who could support HIV interventions for AYA see these activities as someone else’s responsibility.^14,15 This phenomenon ultimately leads to providers shirking patient care responsibilities, which results in AYA falling through the proverbial “cracks.”^14,15 Despite the mature minor laws mentioned earlier, there are many opportunities for confidentiality to be breached.¹⁶ These factors may preclude them from engaging in HIV prevention, testing, and treatment. For instance, electronic health records may complicate health care providers’ ability to have confidential discussions, order testing, and prescribe medications for AYA without a caregiver or legal guardian finding out.¹⁷ Among AYA on their caregivers’ health insurance, concerns about what services show up on explanations of benefits may prevent engagement in HIV testing, prevention, and care in the first place; for those who choose to forgo using insurance, out-of-pocket services may be difficult to afford. In the research context, requiring legal guardians’ permission for participation is shown to systematically exclude certain groups of adolescents who are behaviorally vulnerable to HIV [eg, SGM; Black, Indigenous, and People of Color (BIPOC)] that may bias research findings. Waivers of legal guardians’ permission can alleviate this barrier but can be a challenge for researchers to secure.^18,19

The authors are a group of clinicians and researchers who collectively have decades of experience working in HIV with AYA populations and who were funded across 5 implementation research projects funded by the federal EHE initiative. Based on these experiences, the goal of this commentary is to summarize common methodologic approaches across our projects and body of work. Here we aim to offer concrete recommendations to those working with, or aspiring to work with AYA, which can support ethical, just, culturally sensitive, and developmentally appropriate HIV prevention research with and for AYA populations.

METHODS

Our teams engaged in 5 AYA-focused EHE projects, which were initially funded by administrative supplements to our respective Centers for AIDS Research between 2020 and 2023. Table 1 summarizes methods, outcomes, and geographic locations of these projects. The authorship team, consisting of EHE project leads and coinvestigators, met multiple times during the course of 3 months to share information about our respective study protocols and manuscripts, “behind the scenes” information about how studies unfolded in practice, the specific strategies that study teams used to reach, engage, disseminate to, and compensate or support AYA throughout the research process. The authorship team also discussed how these strategies may have differed from their work with other populations and age groups. The authorship team then identified and distilled methodologic commonalities across projects into the lessons learned described in the Results section below and in Table 2.

TABLE 1.

Summary of 5 Ending the HIV Epidemic in the United States Supplement Projects Focused on AYA

Title	Years	Location	Age Group	Methods	Outcome
PrEP4Teens: Adaptation of a social marketing campaign to promote pre-exposure prophylaxis awareness among adolescents	2020–2021: Supplement to conduct preimplementation research; 2022– Present: Campaign planning, development, and implementation	Cook County, Illinois	13–18-yr olds	Online focus groups with LGBTQ+ AYA with adults who work with, mentor, or parent LGBTQ+ AYA; youthled design of campaign elements	Preferences for social marketing campaign content, modality, implementation; acceptability and feasibility of campaign drafts
Pleasure and PrEP study (Pleasuremeter): Formative research to promote sex-positive HIV prevention counseling for young sexual and gender minorities of color	2022–2025	Los Angeles County, California and Mecklenburg County, North Carolina	18–29-year olds	Online surveys and interviews with AYA and providers who care for AYA on sex-positive counseling needs and barriers	Priorities for future HIV prevention counseling intervention informed by sex-positive and wellness discussions; preliminary feasibility and acceptability data
YEHE: Automated Directly Observed Therapy Pilot: Improving HIV Care Among Youth	2022–2023	California and Florida; online recruitment with representation from these counties: Alameda Los Angeles Riverside San Diego San Bernardino, Broward County Duval County Miami-Dade County Orange County Pinellas County	18–29-year olds	Online surveys at baseline and 3 mo with AYA living with HIV who used a smartphone app for automated directly observed antiretroviral therapy along with conditional economic incentives; qualitative interviews with participants and providers	Feasibility, acceptability, facilitators, and barriers to the intervention
The Incentives and Prevention Study: Preparing for Implementation	2022–2023	Los Angeles County, California	Originally focused on 18–34-year-old AYA; ultimately opened to all age groups but recruitment focused on AYA people, and analyses stratified as younger than 30 yrs old and 30 yrs and older	Surveys, including discrete choice experiments, to identify preferred attributes of conditional cash transfers to incentivize pre-exposure prophylaxis use and HIV testing behavior	Preferred design of a conditional cash transfer intervention for HIV prevention (PrEP use, HIV testing)
THEMA: Harvard University Center for AIDS research: Tailoring HIV/pre-exposure prophylaxis messages for adolescents	2022–2024	Boston, Massachusetts; Los Angeles County, California; and online national recruitment	13–26-year olds	Qualitative interviews with AYA to develop social media-style videos using behavioral economics techniques regarding framing of messages around preexposure prophylaxis; qualitative interviews with additional AYA to receive feedback on videos	Preferred design of a social media-style video for education on pre-exposure prophylaxis and preference on framing of messaging

TABLE 2.

Lessons Learned and Research Considerations From 5 Ending the HIV Epidemic in the United States Supplement Projects Focused on AYA

Lesson	Application	Lessons Learned	Research Considerations
1. Reach and dissemination: use multiple, nimble, and creative methods to reach and disseminate information to AYA throughout the study’s life as needed	Recruitment for research and programs Dissemination of health information to educate clients	Need multiple online social platforms Use a combination of epidemiologic data and succinct, clear behavioral change messaging Provide tips on how to check for credible information online Use same ads across sites and with quick response, or QR, codes for online information	Pilot test advertisements for image inclusivity, preferred language, and color schemes Pilot test social media influencers to ensure authenticity Rotate schedule for posting advertisements across sites Use multiple languages Use health communication theory, A/B testing, and demand creation to engage audiences
2. Engagement: engage AYA meaningfully into projects using both digital and inperson approaches to improve trust and buy-in	Promote behavior change and dispel misinformation	Include portal or link to access health care providers and submit questions Consider the role of digital storytelling and arts-based methods for engaging AYA in health behavior change interventions Provide information about data security and safety in use of artificial intelligence tools	Ongoing maintenance and update of information and data Relevant to multiple methods for HIV prevention, testing, and treatment Offer signing up for listservs to hear about study updates, research results, and other paid opportunities Consider low-cost platforms with open access to public facing documents Ensure intervention can be accessed online and offline Get AYA input on how to ensure privacy Make tools feel less clinical, more customizable
3. Compensation: consider “payment” broadly and offer AYA not only equitable compensation for their time but also build in nonmonetary benefits to support youth	Promote ongoing retention because of study’s social benefits beyond monetary compensation Motivate pre-exposure prophylaxis or antiretroviral therapy use and build habits	Consider the role of social engagement as a facilitator of ongoing involvement in programs or studies Conduct needs assessment with focal audience to identify ideal nonmonetary compensation Financial incentives are more effective when combined with other strategies such as reminders	Stagger access to incentives to correspond with all activities Consider certificates of completion and sharing language about study activities that AYA can include on resumes and discuss in job interviews Advocate for cash payments wherever possible with minimized paperwork Get input from AYA on timing, structure, and mode of incentives and what other support is needed in combination to build habits

RESULTS

Across our EHE projects, we identified 3 major approaches that our teams used to reach, engage, and support AYA participants throughout the life of our studies:

• Reach and dissemination: use multiple, nimble, and creative methods to reach, tailor, and disseminate information to AYA throughout the study’s life as needed.

• Engagement: engage AYA meaningfully into projects using both digital and in-person approaches to improve trust, buy-in, and acceptability of studies and interventions.

• Compensation: consider “payment” broadly and offer AYA not only equitable compensation for their time but also build in nonmonetary benefits to support youth well-being.

These practices are summarized in Table 2. Below, we narratively illustrate these practices with concrete examples. We further describe cross-cutting considerations across these 3 approaches that can enhance investigators’ work with AYA.

Reach and Dissemination

Across studies, we found a need to be flexible, creative, and persistent in our approach to reaching participants through the use of multiple platforms, educational and empowering messages, and language accessibility for the focal populations. Across the 5 projects, engaging methods used by AYA were central to study recruitment, and to the dissemination of health information for educational purposes. Multiple platforms were used to recruit and reach AYA—for example, geosocial networking sites such as Grindr and Jack’d were successful in recruiting sexual minority adult men older than 18 years, and social media sites such as Instagram and TikTok were useful for AYA of all ages, but notably with younger teens. Regular monitoring (eg, weekly) by study staff was necessary to identify whether these platforms were successful, what content resonated with the intended AYA audiences, and whether pivots were needed to capitalize on other spaces AYA spent their time online. Educational messages combined epidemiologic data with succinct, clear, empowering behavior change messaging. Messages and visual assets were pilot tested with AYA and social media influencers popular with youth to ensure authenticity, inclusivity, correct use of multiple languages (with a recommended fifth grade reading level), and desirable and accessible color schemes. Social media posts also included tips for AYA on how to check for credible information online. Below we highlight 2 case studies from our projects that sought to understand AYA preferences for reach and dissemination of HIV prevention messaging (Fig. 1).

FIGURE 1.

Example EHE study materials developed in partnership with AYA participants. A, Video stills from THEMA study. B, Website from PrEP4Teens study.

The Harvard University Center for AIDS Research: Tailoring HIV/PrEP Messages for Adolescents (THEMA) study aimed to understand how using behavioral economics (specifically principles of message framing) would be perceived by diverse AYA.^20,21 Researchers recruited AYA aged 13–26 years using flyers in several clinical settings (including community health centers and college health centers) and online advertisements on sites such as Instagram. Qualitative interviews were conducted with AYA to understand how they wanted to receive information about HIV and PrEP and to obtain their feedback on existing PrEP campaigns. After rapid qualitative analysis,²² the study team shared findings with a video production company, Rocketship Creative (rocketshipcreative.com), that had experience making videos about PrEP and working with lesbian, gay, bisexual, transgender, queer (LGBTQ+) people and organizations. Two social media-style videos were created to share facts about PrEP: one using gain-frame messaging and the other using loss-frame messaging. Video scripts and design incorporated feedback from the initial interviews, including wanting a TikTok-style video, using near-peers to deliver the messaging, and types of facts that should be presented. The production company hired an AYA social media influencer to be in the videos, which differed only in that key information was presented as either gain-framed or loss-framed. These videos were then shown to a new sample of AYA recruited in the same manner as video development to receive feedback on whether they preferred gain-framed or loss-framed messaging and the overall aesthetic and design of the video. Most participants (53.3%) preferred the gain-framed video over the loss-framed video, although 16.6% did not have a preference because of the videos being too similar. The gain-framed video was described as “friendly” and “positive,” whereas the loss-framed video was described as using a less-friendly tone. Participants were interested in seeking more information about PrEP after watching the videos regardless of the framing of the message. Further details will be available in the full manuscript for this study, which is currently under review.

The PrEP4Teens (prep4teens.com) study began as a 2020 EHE supplement aimed at understanding LGBTQ+ adolescents’ and supportive adults’ perspectives on and preferences for a social marketing campaign to increase Chicago-area adolescents’ awareness of PrEP.^23,24 During formative focus groups, interviews, and surveys, participants shared preferences for campaign content, such as basic information on PrEP, including eligibility, cost, whether a legal guardian’s permission was required, and local PrEP providers who served minors. Respondents desired a campaign that was inclusive of anyone who could benefit from PrEP, including cisgender heterosexual teens and Spanish-speaking communities. Digital and in-person dissemination that reached adolescents through murals and art, swag/giveaways, community building activities for adolescents, social media, and an informational website in English and Spanish were desired. The campaign closely followed this guidance and officially launched in November 2023 with a website, Instagram and TikTok accounts, and community-based events to reach and disseminate sexual health information to local LGBTQ+ and BIPOC adolescents. At the time the research data were collected in 2021, reaching and disseminating to adolescents through Instagram/Meta advertising were highly effective because researchers could focus their advertising on minors with specific age ranges and sociodemographics, including presumed sexual orientation, gender, race, ethnicity, and geographic location.

Engagement

Our success in youth-engaged work hinged on our ability to marry both in-person and digital approaches; reasons include crossing the digital divide and fostering social connection between the youth themselves. Currently >95% of AYA in the United States own a smartphone,^25,26 which highlights the importance of using hybrid digital and in-person engagement to promote behavior change and dispel misinformation in this group. Across our EHE projects, most used digital strategies to engage AYA in some form with several lessons learned: (1) create digital strategies that are relevant for multiple methods for HIV prevention, testing, and treatment; (2) use free or low-cost platforms that AYA already use, with open access to public facing documents (eg, WhatsApp, Slack, Google Drive); (3) provide accessibility even with limited internet connectivity; (4) minimize clinical/technical jargon and be more customizable; and (5) incorporate AYA’s input on how to ensure privacy and accessibility. Below we highlight two case studies that used digital engagement in developing and piloting AYA-focused interventions.

The Youth Ending the HIV Epidemic (YEHE) study piloted an intervention that combined automated directly observed therapy through a smartphone application (“app”) with conditional economic incentives to improve antiretroviral therapy adherence among 18–29 year old young adults with HIV in California and Florida who had an unsuppressed viral load at their last laboratory test. The study enrolled 28 participants in 3 months to assess the feasibility and acceptability of the intervention. The app used artificial intelligence for facial recognition to identify the individual participant and to recognize medication dosing. The study’s youth advisory panel provided input on the structure, amount, and type of financial incentives. They also gave feedback on the app, the reminders provided by the app, and privacy and confidentiality concerns before study initiation. During and after the trial, a subsample of the 13 pilot participants and 5 health care providers participated in in-depth qualitative interviews to explore the intervention and implementation facilitators and barriers. Overall, participants liked the app and found it useful to help build a habit around antiretroviral therapy adherence. They also enjoyed other features such as daily reminders. In qualitative interviews, participants expressed a desire to be able to connect with communities of other AYAs through the app (eg, chat feature, leader board) and requested more information about data privacy, highlighting the importance of data security and safety in use of artificial intelligence tools. The study was also conducted fully remotely using digital means—there were no in-person visits, only visits through Zoom or online—and participants liked that aspect and found it easy.

The Pleasure and PrEP study aimed to explore the needs of SGM AYA of color in sexual pleasure-based (as opposed to risk-based) HIV prevention counseling. In addition, the study sought to identify challenges and opportunities to the use of this type of counseling approach by providers caring for this population and assess preliminary feasibility and acceptability of a sexual pleasure-based counseling intervention. The researchers conducted descriptive online surveys and semistructured, in-depth interviews with SGM AYA of color in North Carolina and California. Furthermore, researchers interviewed providers to understand their counseling needs, followed by a 3-month pilot study of the pleasure-based intervention. All data collection and pilot trainings were done remotely through a remote conferencing platform or online survey tool. Because the study is still ongoing, participant feedback is being used to tailor the messaging of the intervention and the intervention tool and training content. AYA input ensures that the tool is based on a holistic, judgment-free approach. Feedback from providers ensures that the intervention is feasible to use in a health care setting considering other time and resource constraints.

Across all our youth-focused EHE projects, AYA input and the use of both digital and in-person approaches to engagement have been essential to creating messaging and interventions that are tailored to young people’s needs, ultimately making these interventions more effective. It should also be noted that most projects occurred during height of the COVID-19 pandemic, which mostly required digital engagement. After the United States shifted to a different phase of the pandemic, we noticed more of a demand and desire for in-person community-building among AYA participants, in conjunction with digital strategies. For example, during implementation preparation, PrEP4Teens engaged AYA creatives in codesign of campaign assets (eg, flyers, palm cards, murals, logos, emojis) with adult artists and marketing professionals through in-person meetings, Zoom calls, and asynchronous Discord chats. During the implementation phase, the PrEP4Teens team held in-person workshops where AYA could learn about how creative work has been used for advocacy and activism in the HIV and LGBTQ+ rights movements and develop their own art pieces for the campaign.²⁷

Compensation

Compensation must be approached with equity in mind, and our research teams encouraged consistent engagement using different, sustainable monetary and nonmonetary ways. This included reminders for upcoming activities sent on preferred communication platforms, cash incentives whenever possible, nonmonetary engagement such as social events where research activities were optional, and access to support services such as care referrals to address broader social determinants of health beyond HIV prevention. Financial incentives can be effective for promoting engagement in HIV prevention, testing, treatment, and research in AYA, but consideration should be given to the timing, format, and number of incentives and other structural and social factors that AYA are navigating [eg, desire for discretion from caregivers, (lack of) access to bank accounts, immediate financial needs]. In the YEHE pilot study, multiple methods were used to boost adherence and persistence to antiretroviral therapy. For instance, adherence reminders at a time convenient for the participant and daily conditional economic incentives motivated daily adherence. These were provided as cash incentives through a digital wallet at the end of the week, but participants were notified about this incentive after each daily dose through the app. Weekly incentives motivated persistence—if the participant successfully took 7 doses in a row, they received an additional cash incentive. Over half (59%) of the YEHE participants indicated that these incentives helped improve daily adherence. Yet, in qualitative interviews, participants noted that while the financial incentives had a positive effect on their adherence, the incentive amount should be increased to truly motivate their behavior. In addition, participants stated they were more motivated to improve their health through app use and reminders, regardless of the incentive. These findings suggest that incentives can be beneficial but could be combined with other interventions to increase the positive benefits of incentives.

In terms of preferences for financial incentives, the YEHE study found that most participants preferred cash for incentives through a digital wallet (eg, Venmo, CashApp) compared with receipt of a gift card, store voucher, or prize. Participants were also willing to wait a short amount of time (such as a month) for a slightly larger amount (eg, $1.00 each day) rather than immediately receive a lower amount (eg, $0.75 each day). AYA preferred a guaranteed amount rather than taking their chances with a lottery, even if the lottery promised larger incentives. The Incentives and Prevention Study also measured preferences for financial incentives to promote PrEP use and HIV testing through a discrete choice experiment. Respondents younger than 30 years old were significantly more likely to prefer a financial incentive paid monthly (versus annually) than respondents 30 years old or older, and wanted cash payments rather than gift cards. These preferences for incentives are being incorporated into features of both the YEHE and The Incentives and Prevention Study interventions going forward. In PrEP4Teens, owing to structural obstacles with quickly paying adolescents through the university with physical cash or digital wallets, the research team and community partners agreed that the partner organizations would handle payment distribution because they had fewer restrictions on incentives.

Nonmonetary incentives and wraparound services were not always planned by the research teams, but as projects evolved, it became clear that this was a strong need and desire from AYA that project teams needed to address. For example, some studies began supporting economic and professional development for youth, such as job support, resume reviews, and/or professional opportunities to develop research skills that could be leveraged for employment. In PrEP4Teens, adolescents who had participated in formative research were hired 2 years later as “youth leaders” (administratively coded as “temporary research assistant” positions), which not only provided a source of income but also a way to build leadership and work experience and ensure the campaign continued to resonate with AYA. During weekly youth leader meetings, the study team members responded to youth leader needs, such as sharing career advice and trajectories, helping with resumes, and encouraging AYA to contribute artistic materials to the campaign (eg, music, videos) for which they were paid and could also build their professional portfolios. Relatedly, the THEMA and PrEP4Teens studies offered opportunities for participating in community and academic panels and presentations, and THEMA offered coauthorship on manuscripts, which was of particular interest to youth interested in higher education. In other instances, nonmonetary incentives took the form of wraparound services beyond the initial scope of the project, such as referrals to sliding scale mental health care providers in the region who had specific expertise in caring for AYA and SGM populations. The Pleasure and PrEP study offered transportation for AYA to and from visits, priority mental health referrals, and also referrals to social service providers who had food pantries and intimate partner violence case managers on staff at all times. During the COVID-19 pandemic, greater prevalence of food insecurity and household violence was often reported by participants, and having partners who were already providing services in the region were mandatory for both continued recruitment and retention process and community trust and engagement with the work.

Cross-Cutting Developmental and Sociocultural Considerations

Across the above three areas, investigators should be cognizant of developmental, ethical/legal, and social–cultural issues that may differ across age groups and affect their participation in HIV research. Of note, only one of the studies focused on teenagers exclusively, whereas the other studies focused on a wide age range inclusive of minor AYA. In the latter cases, the research teams took care to ensure that their research processes and materials were responsive to different age groups. This sometimes meant that there were multiple sets of materials and different considerations depending on their sample’s age composition, local IRB requirements, and laws that affected minor adolescents in their jurisdiction (eg, a consent form for youth of age 18 years and older, and an assent form for teens younger than 18 years).

In addition, when research is deemed minimal risk, investigators are encouraged to seek waivers of guardian permission from their institutional review boards to reduce minors’ barriers to participation in HIV and PrEP research. Such waivers require that study teams have additional protections in place to mitigate possible risks. These include having staff, clinicians, and partners who are experienced in working with minors; using capacity to consent assessments²⁸ to determine whether adolescents understand, appreciate, and can make informed decisions about participation; remind adolescents of the voluntary and ongoing nature of participation and that nonparticipation will not adversely affect them; having an adult available who can serve as a sounding board for the adolescent if they have questions about their decision to participate; and ensuring study materials are developmentally tailored to maximize understanding of study concepts and procedures.²⁹ Some institutions also may encourage participants to share about their interest in a study with a guardian or other supportive adult if appropriate. Furthermore, allowing minor adolescents to self-consent can ensure that the adolescents themselves receive any monetary compensation from participation, rather than their guardians.

Finally, in the short time that the authors conducted these EHE studies, we observed rapid changes in youth culture and its intersection with online spaces/platforms they use, and our study teams had to be agile to keep pace with these developments. For example, the online spaces that were useful for reaching AYA in 2020 may not have the same return on investment now in part because of consumer preferences, new platforms, and changes in how platforms functioned. Social media platforms have placed increasing restrictions on advertisers’ ability to market to minors and minoritized populations, making scientists’ and community organizations’ ability to reach, engage, and disseminate to key adolescent populations affected by HIV more challenging; this highlights the importance of leveraging diverse online and offline strategies. Furthermore, aesthetics, media trends, and slang are ever changing, and study content can look dated quickly. Keeping current on these various shifts with input from youth advisors can increase likelihood of AYA engagement and representation in HIV research.

DISCUSSION

Without a concerted focus on AYA and use of creative, innovative strategies to address HIV prevention, testing, and treatment that meet their needs, we will fall short of EHE efforts. Because there are unique considerations in engaging AYA in HIV research and care that may be distinct from working with other populations, this commentary sought to “pull back the curtain” by sharing concrete examples of how our teams have included and centered AYA throughout different stages of the research process. Ultimately, we hope that these examples help shed light on how we might learn from and work with AYA to end the HIV epidemic.

Community partnerships were a requirement of the EHE projects, but in addition to engaging with the adult leaders of organizations that worked with AYA, we sought to integrate AYA themselves throughout the research process. This meant an approach whereby investigators listened closely to youth and community needs during formative research, practiced humility, and creatively identified ways to integrate scientific questions and approaches into the fabric of AYA’s lives. For instance, in some studies (eg, THEMA, PrEP4Teens), researchers deferred to AYA’s creativity and expertise in developing and disseminating recruitment advertisements and social marketing materials, rather than these decisions coming from the research team. We have learned how timely incentive payments, and the format in which incentives are delivered, can help build relationships between researchers and participants, but academic institutions’ bureaucracy may hinder that effort. This youth-engaged, human-centered approach can not only enhance the applicability of research to key populations and accelerate its implementation and dissemination, but also advance health equity among AYA in part by addressing social–emotional needs for belonging and autonomy, and practical needs such as learning about HIV, building life skills, and receiving financial and material support from studies. Although these approaches to research are not new, they have only recently been emphasized in domestic HIV science through the EHE initiative.^30–32

Given the unique obstacles discussed related to AYA’s legal, social, and developmental status, we acknowledge that this work can be challenging, time consuming, and sometimes at odds with traditional approaches to scientific research and outcomes that are prioritized by academia. This work must also be done in a rapidly shifting legal and social landscape in the United States that is particularly hostile to AYA populations most affected by HIV, such as LGBTQ+ and BIPOC populations. For instance, “parental rights” movements; bans on sexual and reproductive health care and gender-affirming care; and laws affecting diversity, equity, and inclusion efforts all have the potential to make HIV prevention, testing, treatment, and research even more challenging.³³ Although we call for research that aims to hear from AYA themselves and equip them to better engage in HIV services, we cannot solely rely on young people’s self-advocacy to curb infections. Research and interventions must also focus on the multilevel systems that affect the lives of AYA, such as schools and other places frequented by youth (eg, libraries, community centers), families and supportive adults, AYA-serving health care professionals, and laws and policies that may disempower AYA. This “whole person approach”² to EHE efforts can mitigate the effects of the “purview paradox” mentioned earlier by engaging anyone responsible for AYA health and well-being into efforts to help them thrive. For instance, the THEMA project is engaging health care providers by using behavioral economic techniques (nudges) in electronic health records to assist prescribing clinicians identify AYA who may benefit from PrEP.

As noted earlier, there is still wide regional variability in knowledge, awareness, and access to basic sexual and reproductive health services to which minors can self-consent. More research is needed to increase engagement of supportive parents and health care providers in adolescent HIV prevention and care, and sexual and reproductive health broadly. These adults are often well positioned to educate AYA or support their health care autonomy, but are not doing so because of their own lack of knowledge or communication skills about these nuanced topics.^34,35 Future research should also explore how promotion of factors such as “time alone” with providers can build youth’s self-efficacy to explore HIV and sexual health topics, and also routinize the expectation that adolescents be given independent time with providers to have their needs addressed.

Although our projects focused on EHE priority areas in the United States, the lessons we have shared here are likely useful elsewhere domestically and internationally. In fact, some of our projects and approaches to working with AYA were originally inspired by research done by our colleagues outside the United States. For instance, the 4YouthByYouth initiative used youth participatory action research and user-centered design to increase HIV self-testing in AYA in Nigeria.³⁶ The investigators partnered with local health and community leaders to host an innovation tournament in which local youth submitted their ideas for improving HIV self-testing, and youth whose strategies were advanced worked to design and implement strategies in their own communities with support from the project team. These investigators have also focused on exploring how to sustain adolescent HIV research and services in resource-limited settings.³⁷ We encourage investigative teams to look to global health research that has successfully and creatively engaged AYA in HIV research and implementation efforts. Exploration of how to translate best practices in future research would also include better understanding of ways that wraparound care services have been provided in global contexts, yet less successful in the United States. Furthermore, more research is needed to understand the ways in which sociocultural context affects the lived experiences of AYA and their ability to engage in HIV prevention research.^38,39 For instance, the concept of sexual pleasure as explored in the Pleasure and PrEP study would be differently interpreted in an east African context and would require thoughtful cultural adaptation and translation accordingly.⁴⁰ Future studies should also explore the applicability of recruitment and compensation best practices for AYA within different settings and countries.

In closing, HIV research with AYA must meet young people where they are to successfully reach and engage them throughout the life of a study. This work necessitates a shift in mindset that requires investigative teams to think outside the box to make larger strides in the youth epidemic. We call for the EHE initiative to place increased emphasis on AYA, including partnering directly with AYA and allowing their perspectives to shape research and implementation efforts. This can infuse AYA-centered EHE efforts with more innovative and creative strategies while also ensuring they are relevant, engaging, and developmentally sensitive. We also call for more research, practice, and advocacy to improve the systems and communities that bear on their health and well-being (eg, health care providers, supportive adults, schools, laws, and policies), because without a “whole person”² approach, youth will continue to lag behind adults in EHE efforts.