Proceedings of a Workshop—in Brief

The Science of Engaging Youth Lived Experience in Health Research, Practice, and Policy

Proceedings of a Workshop—in Brief¹

INTRODUCTION

There is a growing body of evidence demonstrating the value of incorporating youth voices in the development of research and programming aimed at supporting youth well-being. Participatory methods have the potential to help address pressing challenges to youth well-being with more effective, relevant, and sustainable interventions, and in ways that engage historically marginalized communities among youth. However, their use often requires additional time, budgetary expenditures, and training. Given the growing use of such methods, there are opportunities to learn how to better incorporate participatory methods into research, systems, and programs for child well-being and, for developing broader networks of experts engaging with participatory methods. With this context in mind, on October 11 and 12, 2023, the Forum for Children’s Well-Being hosted a two-day virtual public workshop, The Science of Engaging Youth Lived Experience in Health Research, Practice, and Policy, which was designed to explore:

• Evidence demonstrating the impact of youth participatory methods including the potential for participatory methods to produce more effective, relevant, and sustainable interventions;
• The potential for participatory methods to engage historically marginalized communities among youth;
• The challenges of instituting participatory methods, including time, budgetary expenditures, and training; and
• Opportunities to better incorporate participatory methods into research, systems, and programs for child well-being.

Dashia Wright (University of Kentucky Counseling and Psychology Masters Student, youth leader, and planning committee member) noted the workshop had been developed in partnership with youth leaders who played an essential role in shaping its agenda and objectives, and who would participate throughout the workshop as expert speakers and moderators. Leslie Walker-Harding (MD, forum co-chair, Ford/Morgan Endowed Professor, and Chair of the Department of Pediatrics at Seattle Children’s Hospital) urged the audience to “remember that the knowledge of youth is essential, and the power of youth voices is immeasurable”, and expressed hope

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¹ Complete workshop agenda, speaker bios, and speaker slides can be found here: https://www.nationalacademies.org/event/40727_10-2023_the-science-of-engaging-youth-lived-experience-in-health-research-practice-and-policy-a-workshop

that the vision of youth leaders could contribute to a brighter future for us all.²

YOUTH LEADERS ROUNDTABLE

To begin the workshop, four youth leaders engaged in a guided conversation that was moderated by Wright. She invited each of the speakers to introduce themselves and share a description of their work around youth lived experience and partnership.

Maygan Martinez is Co-Founder and Director of the 1999 Collective, a nonprofit in Utah to help youth transitioning out of foster care. She serves as co-chair of the Client Focused Core Function Group for the Salt Lake Valley Coalition to End Homelessness, Chair of the Lived Expert Task Group and Youth Experiencing Homelessness Task Group, and serves as President of the Youth Advisory Board hosted at Salt Lake County Youth Services.

Grace Minakowski is a high school junior and Legislative Chair of the Maryland Youth Advisory Council, which is a state council created to advise lawmakers on youth policy and serve as the voice of youth in Maryland. She works directly on legislative and lobbying efforts for youth-focused bills.

Trace Terrell is a youth mental health advocate and sophomore at Johns Hopkins University studying public health and writing. He has previously volunteered with Youth Line (a teen crisis line) and focuses his advocacy efforts on expanding access to mental health resources and peer support for adolescents. Terrell has also testified before Congress on the youth mental health crisis.

Minhal Nazeer is a high school senior from Louisville, Kentucky representing the Kentucky Student Voice Team (KSVT), where she serves as a research lead. Her team has published reports on topics including youth mental health during the COVID-19 pandemic; race and ethnicity in schools; and college readiness. Nazeer focuses her work on assessing student perspectives to inform education policy and advocacy in her state.

The Personal Impact of Youth Engagement

When asked about the effects lived experience work had on their life trajectories, speakers described a great breadth and depth of impact. Nazeer explained that KSVT helped her realize the role she may play to address the issues important to her as well as taught her how much power and value she had in her unique perspective. Terrell shared that peer support “truly did save my life,” and “helped me turn a lot of my pain into purpose and action.” He emphasized that peer support training provided him with valuable tools for long-term professional development and eventually led him to pursue a career in mental health. Martinez similarly noted that her lived experience work has shaped her career and helped her to recognize her own self-worth and potential to impact her community. Minakowski noted that her work has made her an expert on policy in her state and has deepened her connection to her community. In addition, she highlighted the value of seeing and engaging with other youth committed to creating change.

Challenges Facing Youth Who Engage Their Lived Experience

Wright invited speakers to reflect on the greatest challenges encountered in their efforts. As Martinez stated, youth engagement can take the form of tokenism. Rather than truly listening and incorporating youth perspectives, youth engagement can leave youth wondering “why am I here?” Terrell pointed to Roger Hart’s Ladder of Children’s Participation (a tool used to evaluate the quality of youth engagement).³ The ladder places modes of engagement on a continuum from exploitative to empowering. He flagged problematic modes—manipulation, decoration, and tokenism—each of which involve youth superficially in service of adult priorities. Terrell further argued that these forms of engagement are still too common and noted that the goal of youth engagement should be sustained, equitable partnerships with youth sharing power.

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² Though the workshop title refers specifically to “lived experience” we defer to the language used by each speaker in this Proceedings in Brief. As a result, a variety of terms are used to describe the broad range of programming and initiatives that partner with youth to engage their expertise in their own needs and experiences. Terms used include: lived experience, youth partnership, youth engagement, youth voice, and youth participatory action research.

³ Hart, R. A. (1992). Children’s participation: From tokenism to citizenship [Innocenti Essays No. 4]. UNICEF. https://www.unicef-irc.org/publications/100-childrens-participation-from-tokenism-to-citizenship.html

Nazeer shared an experience in which youth expertise was questioned when she and other youth researchers led a forum of school board candidates:

Minakowski expanded upon this tension, relaying an instance in which her advisory council advocated for a bill to enforce the Maryland Department of Education’s standards for health curricula, which include discussions of sexual health, gender, and sexuality. The bill failed and she credited this, in part, to push back from local school boards. Minakowski explained, “it can be really disheartening to feel like adults are only so willing to listen to you until we say something that they don’t necessarily want to hear.” Nazeer echoed the discouragement experienced when initiatives fail and

noted the need to “take a step back and understand the extent of all the progress you have made.”

The speakers also described individual challenges faced in their roles as youth leaders. Martinez discussed the challenge of being expected to “speak for an entire population” as a youth of color when her individual experience cannot encapsulate all identities or experiences. She specifically cited the difficulty of having to conform to predominantly White spaces as a woman of color. Nazeer highlighted the tension she has experienced between the value of engaging as a youth leader and the betrayal of adults in power who abdicate responsibility and place the burden on youth to ensure their own future well-being.

Training and Supports to Facilitate Youth Engagement in Well-Being Programs

When asked about what has helped them through challenging moments, several youth leaders emphasized key supports they received from adult partners. Nazeer and Terrell both emphasized that partnering with youth requires expertise and should be taken seriously as a scientific approach and as a professional skillset. Martinez highlighted the value of adults who help young people feel safe, and who understand that drawing on lived experience may require youth to relive trauma.

In terms of programmatic support, compensation was noted as important but often lacking, as Martinez argued “if you seek out a consultant, you would pay a consultant […] that’s what we are as well.” Terrell suggested that engaging with youth as true partners can require a change in mindset and “self and organizational reflection by adults.” Compensation for youth was also a common support identified in later workshop sessions focused on models for engagement and on evidence of impact.

Multiple participants discussed the need for more formal training and onboarding for youth who become involved in well-being programs, policy advocacy, and research. Terrell highlighted youth-serving mental health organizations as an example of a field that commonly has robust training for youth participants. He also argued that engaging youth can serve downstream workforce benefit, providing early technical training and encouraging the pursuit of careers in mental health. Nezeer noted that training can also be complicated by the frequent turnover of youth volunteers. As she explained, her team continues to have trouble maintaining “institutional knowledge” as students continually graduate and move on.

Minakowski also emphasized the value of conducting research to document the outcomes of youth engagement urging researchers to ask “how does having a student member on things like a school board affect policy in the school board? What does their vote look like? What does their training look like?” She also called for improved dissemination of research to youth and improved youth access to research, highlighting the barrier presented by paywalls. Minakowski urged researchers to consider how they could bring research about youth well-being directly to youth, giving examples like videos and summary articles targeted to youth.

When asked for parting thoughts, participants shared the following: Minakowski reiterated the expertise youth hold on their own experiences and needs; Martinez encouraged decisionmakers to go beyond listening to youth to acting on their priorities; Nazeer reminded listeners that a key perspective is missing when adults speak on behalf of youth; and Terrell amplified the value and simplicity of asking youth what they need, stating “just ask us. We can provide guidance […] it’s really as simple as asking.”

EVIDENCE AND IMPACT: WHAT DOES SCIENCE TELL US ABOUT THE OUTCOMES OF YOUTH ENGAGMENT?

The second session of the workshop explored evidence around youth engagement and its impact, featuring researchers with expertise in youth engagement methods. The session was moderated by forum member April Joy Damian (Vice President and Director of the Weitzman Institute). Damian invited speakers to describe their work in engaging youth voice, with particular attention to methodologies. Michelle Abraczinskas (Assistant Professor of Youth Development and Prevention Science at the University of Florida) explained that she employs youth participatory action research (YPAR) as an approach to research with youth. She explained that

YPAR can be youth led or youth-adult power sharing and is a research process through which youth decide on a problem that is important to them, conduct research on that issue, and are actively involved in informing the solutions, policies, and programs used to address the issue. Abraczinskas’ work includes partnership with the Ozer Research lab with Brian Villa (University of California, Berkeley, second-year Doctoral Student in Public Health). Villa expanded on YPAR methodology noting that it “elevates young people as living experts” and supports young people in conducting systematic inquiry on issues that directly impact them, including generating evidence. YPAR, he suggested “shifts the narrative of what traditional research or evidence looks like” and enables adults to understand complexities and nuances that they would otherwise miss. Abraczinskas shared different youth engagement approaches, noting that different levels of engagement might be more or less appropriate depending on a project’s aim and the capacity of youth and adults involved (see Figure 1).

She explained that YPAR is one of the best evaluated approaches to engaging youth and has been the subject of thousands of studies and multiple systematic reviews that have documented positive outcomes at the individual, group, and policy/program level.⁴ At the individual level, Abraczinskas highlighted examples of improved attendance at school, improved social skills and relationships, improved behavioral outcomes and overall well-being. At the group level, she described evidence of improved relationships between youth and adults at schools, and greater understanding of youth needs. And at the level of policy and practice, Abraczinskas explained, studies have documented policies and practices’ that are better able to meet youth’s needs as a result of YPAR.

YPAR was also the primary approach of Briana Woods-Jaeger (Associate Professor and Vice Chair of Equity and Engagement in the Department of Behavioral, Social, and Health Education Sciences at Emory University and Director of the THRIVE Lab). She explained that her team developed a curriculum called Youth Empowered Advocating for Health (YEAH) that engages youth in photovoice (an arts-based participatory research method). YEAH works to build youth critical consciousness and empowerment with the aim of producing community change. The curriculum was co-developed with Black young people living at the poverty level. Marjorie Freeman (YEAH youth partner) explained that the experience was not only her first real leadership opportunity but made her more aware of inequities experienced in her community. Woods-Jaeger described a photovoice project focused on supporting youth exposed to community violence, through which youth identified a need to pair conversations about community violence with conversations about racism, and the potential role of Black history education in violence prevention. Based on this work, the lab has received grant funding to evaluate their YPAR process and the impact of the YEAH curriculum.

Clara Wolf (University of Michigan, undergraduate junior) described the work of MyVoice as a nationwide text message-based poll that reaches nearly 1,000 youth from across the country. She explained that the use of text messaging allows youth of all background to participate, especially those who might not otherwise by connected with research groups. In addition to surveying youth opinion, MyVoice includes young people at all stages of the research process, from identifying questions to writing up and publishing findings and aims to elevate the voices of youth to produce more youth-informed and therefore more effective policies and programs. Tammy Chang (Associate Professor and practicing family doctor from the University of Michigan, as well as Director of MyVoice) shared that her vision for MyVoice is that “young people across America have a place that they feel empowered and engaged to say something, to have a role in the things that happen in their community.” Chang

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⁴ See Anyon et al., 2018; Kennedy et al., 2019; Ozer et al., 2020; Shamrova & Cummings, 2017.

concluded that youth participation is crucial for achieving buy-in from youth in policies and programs aimed at their well-being.

Chang identified several case studies of the impact of youth-led research, including a project through MyVoice in which a group of youth researchers were concerned about skin cancer and low rates of sunscreen use among youth. Youth researchers identified the topic, created survey questions, and analyzed the data and found that youth were not unaware of the need for sun protection or unconcerned about skin safety—rather, many experienced blistering sunburns due to the lack of convenient access to sunscreen. After identifying the key barrier, youth researchers worked with the local government to secure funding and to install sunscreen dispensers in places on campus and in the surrounding community, Chang explained.

Another case study project from MyVoice focused on addressing barriers to youth mental health, a core issue for the youth they survey. Chang explained that the adult researchers and local health department officials partnering with youth on this project had predicted that the lack of providers and access were the key factors. In fact, Chang said, many young people identified adult stigma as a key barrier to addressing mental health issues; including adults saying things like “teenage years are supposed to be hard,” “what do you have to complain about,” and “it’ll pass.” Using this feedback, she explained, youth leaders worked with the Washtenaw County health department on a campaign to affirm youth seeking mental health care and raise awareness about youth mental health needs.

Villa highlighted a school-based project in which students were interested in the level of student input in school policy. Youth researchers surveyed nearly half of the student population and found that a majority felt that they had little to no input on school policies and presented their findings to their administration and had conversations about what it would look like to meaningfully engage students in decision-making processes. As a result, students were incorporated in administrative groups at the school and the administration began supporting more student-led events.

Damian turned next to Jean Rhodes (Professor of Clinical Psychology at the University of Massachusetts Boston), who shared that she has devoted her life to studying mentoring relationships and how they can be used to bridge gaps in mental health and other supports for adolescents and young adults. She employs methods including large surveys, meta-analyses, and conducts large federally funded evaluations to study the impacts of peer-to-peer mental health mentoring programs. Through her meta-analyses, Rhodes has documented that peer-to-peer mentorship has doubled the effect of intergenerational mentorship. Peer mentors, she suggested, are seen as credible messengers and can give advice that is uniquely attuned to the needs of other young people. Rhodes also highlighted the importance of employing evidence-based mentoring programs and providing intentional training, support, and oversight to peer mentors. She noted that the results of the meta-analysis suggested that the implementation of peer mentoring without providing peer mentors with training and support from adult professionals showed small effects.

Looking to the future, Rhodes suggested that task shifting through reliance on well-trained peer mentors could address gaps in mental health care resulting from shortages of highly skilled professionals. Task shifting, she explained, enables “step care,” which allows peer mentors to refer their trainees to higher levels of care if they do not have the necessary training to provide support. She also noted that peers can be particularly valuable in efforts to deliver mental health interventions digitally, which often encounter issues around sustained engagement with platforms.

During the Q&A segment, an audience member raised the issue of academic tenure and promotion, highlighting the tensions between prioritizing youth engaged work and seeking promotion. Woods-Jaeger responded with a recognition of the stress around attempting to publish and seeking large grants, as the time-intensive nature of youth partnerships can slow publication, and major grants often do not accommodate the time needed to

build authentic youth partnerships. She explained that her strategies for coping with these tensions included being transparent with her community partners about the expectations of her job and coming together to think about how they can leverage their resources to achieve their shared goals. Woods-Jaeger also advocates within her own institution for improved support for community engaged scholarship. Emily Ozer (Professor at The University of California Berkeley, Director of the Ozer Lab) later shared her work around encouraging institutional support for YPAR in a written comment, which was read to the audience by Walker-Harding. Ozer emphasized the importance of mentorship within and outside of your institution and noted that she has been working with colleagues from around the country to formalize and institutionalize the recognition of engaged scholarship.⁵

MODELS AND LESSONS: ENGAGING YOUTH LIVED EXPERIENCE IN RESEARCH, PRACTICE, AND POLICY

Day two began with a moderated dialogue among youth leaders, researchers, public sector program leaders, and policy advocates engaged in elevating youth voice. The conversation was moderated by Forum member Carlos Santos (Associate Professor in the Department of Social Welfare at the University of California, Los Angeles). Santos was joined by:

Terri Powell is an Associate Professor and Vice Chair for Inclusion, Diversity, Antiracism, and Equity at Johns Hopkins Bloomberg School of Health, and a member of the Center for Adolescent Health

James Gaither is a youth leader and mentor for HeartSmilesMD

Sophie Szew is a Youth Advisor for the National Alliance on Mental Illness and Mental Health America

Joseph Yusuf is a youth changemaker working with the Center for Law and Social Policy

Nia West-Bey is Director of Youth Policy at the Center for Law and Social Policy

Jessica Makin is the Program Administrator for Transition-Age Youth in the Utah Office of Substance Abuse and Mental Health

Theo Schwartz is a Coordinator for Transition-Age Youth in the Utah Office of Substance Abuse and Mental Health

Santos began the session by asking panelists about goals for their work and metrics of success. Most speakers emphasized the importance of partnerships between youth and adults that are genuinely beneficial to youth, rather than merely extractive. Powell suggested that successful partnerships should be mutually beneficial and aim to meet common goals. This is echoed by Woods-Jaeger comments in day one’s evidence and impact session, highlighting the importance of regular open discussion between partners to align priorities. West-Bey explained that many of their youth partners had previously engaged in projects that consulted youth only at the first stage of the project. She continued, “they’ll have a one-day visioning session […] and then they never hear from the folks again.” West-Bey urged upfront commitment to long-term engagement with youth, and to ensuring their priorities are brough to fruition.

These comments echoed suggestions from Abraczinskas in the evidence and impact panel, who emphasized the need for adults to let go of control and let youth lead. As she explained, “your impulse to take control as an adult really starts to creep in” and it can take “conscious effort” by adults to manage their anxiety, desire for control, or outside pressures and let young people lead. In that same panel Woods-Jaeger noted that her lab had built in intentional structures to ensure that power is shared, including a Community Action Board that unites youth, caregivers, health care providers, policy experts, and researchers to provide oversight to their youth-engaged work.

Speakers also stressed the importance of engaging young people on their own terms and in ways that make sense for their lives. Szew argued that organizations should

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⁵ A public presentation on these issues was shared with the audience via the workshop chat, and can be found here: https://www.nationalacademies.org/event/40727_10-2023_the-science-of-engaging-youth-lived-experience-in-health-research-practice-and-policy-a-workshop

“give young people the space” to re-envision systems and policies, rather than forcing them into narrow conceptions of engagement. Yusuf emphasized the value of bringing energy to engagement with youth, and “matching the energy of youth.” Gaither and Schwartz highlighted the need to connect with young people on the topics and through the mediums that most interest them, including through arts, social media, or other creative formats. Speakers noted that this requires humility and openness from adults. In the earlier panel focused on evidence and impact, Chang similarly highlighted the need for humility on the part of adults, and for willingness to fail and learn in the process of embarking on youth engagement work. The day’s closing panel focused on decisionmaker perspectives, Leonard Burton (President of the Center for the Study of Social Policy) echoed the call for humility, noting that recognizing the limitations of your knowledge does not undermine your intelligence, but instead that “your intellectual curiosity as an adult should be for the liberation of the people you are serving.”

Makin highlighted the difficulty of achieving robust youth partnership in describing the Utah Department of Health and Human Services’ efforts in supporting the Salt Lake Valley Coalition to End Homelessness’ (SLVCEH) work to secure funding through the Housing and Urban Development’s Youth Homelessness Demonstration Program. In response to initial proposals encouraging them to deepen their proposed youth engagement, they identified a staff member who could provide dedicated support to youth participants to facilitate their active engagement with the state homeless system. In Makin and her team’s current collaborative efforts, they strive for youth to have “a consistent role in the changemaking process.” Schwartz emphasized the importance of gaining trust in youth communities by engaging with and listening to youth in existing youth-led spaces.

Schwartz noted that openness, humility, and flexibility are also essential to engage populations that have deliberately been pushed out of dominant systems, including LGBTQ+ people and people of color. West-Bey highlighted the need for adult partners to be flexible and willing to work outside of traditional professional norms—as well as be attentive to the culture of young people alongside the other cultural, racial, and ethnic backgrounds young people come from. She offered the examples of meeting with youth partners outside of typical working hours, being aware of youth cultural and communication norms, understanding that young leaders might have family members appear during a virtual call, or that young leaders may benefit from music breaks during long meetings.

Santos next asked speakers about how to engage youth who might typically be left behind in spaces for youth leadership, turned first to Szew for her thoughts. Szew highlighted the exclusivity of youth advocacy, noting that it often requires applications documenting academic achievement, letters of recommendation, and public speaking skills, all of which tend to be more accessible to those who hold racial, economic, or other forms of privilege. West-Bey noted that there is a tendency to create youth engagement processes that “only allows young people who are already very privileged to participate.” She argued that organizations must provide concrete resources to enable authentic participation from a broad group of youth. Key supports include compensating young people for their expertise. West-Bey advocated for “paying young people for their expertise in the same way that we would pay other experts for their expertise.” She also advocated for providing supports such as childcare, transportation, disability supports, and translation services. Powell echoed the importance of compensating young people equitably and respectfully, as well as ensuring access to safe transportation for partnership events. She urged researchers partnering with youth to carefully evaluate their budgets to ensure that they are spending their resources in a respectful and equitable way. Abraczinskas explained that she commonly hears that, without pay, her youth mentors would have had to use their mentor time to work so that they could support their families. She argued that payment is essential to engaging youth experiencing poverty and that adult leaders should budget adequately to pay youth equitably for their time.

Turning to other challenges of implementation, Sanots invited Makin to begin by sharing her thoughts on the challenges around ensuring that youth engagement

has meaningful impact. Echoing the youth leadership roundtable, Makin noted that her team had initially confronted a lack of understanding of the importance of engaging youth voice among adults. To address this, Utah Health and Human Services partnered with Salt Lake County Youth Services staff who worked with the local homelessness systems and organizations to get buy-in for youth engagement, making the case for the value of engaging young people with lived experience of homelessness in leadership roles. As Makin outlined, this outreach was essential to ensuring that their youth action board’s voices would be acted on by the broader community of decisionmakers. She noted that their youth action board has voting power, “but it took the work of the over-30 crew to keep pushing to get the young people into the space and then to let them lead out that work.” Makin and Schwartz’s comments highlighted a theme across speakers that high quality young engagement is time-intensive for staff.

Considering the unique benefits of engaging youth lived expertise, Schwartz emphasized the value, particularly for government officials, of youth-led innovation that can transcend traditional hurdles. As Schwartz noted, “sometimes as government officials we think in black and white, the boxes we’re given, and youth have had some really innovative ideas that haven’t previously been thought of because they’re coming from a whole other perspective.” West-Bey similarly noted that there is great value in the creativity young people bring to the table, that they “push the boundaries” of what a report should look like, or the kinds of activities that can constitute advocacy, including songs, podcasts, and murals, “these are things that are going to live long beyond any report and [can] be viewed much more widely than any report ever would be. Every time you drive down Suitland Parkway [in Washington, D.C.], you’re going to see the mural that we painted.” To conclude the conversation on creativity, Szew suggested “the same avenues that young people are using for healing in their communities, in their lives, are the same avenues that will lead them to create change.”

DECISIONMAKERS PERSPECTIVE: SCALING AND SUSTAINING YOUTH ENGAGEMENT FOR IMPACT

The final session of the workshop brought together decisionmakers spanning policy advocacy, federal public health leadership, state-level legislative leadership, and philanthropy and impact investing. The session was moderated by Trace Terrell (youth leader and Ambassador for Active Minds) and Allysa Ware (Forum Members and Executive Director of Family Voices). Terrell began by asking speakers to share how their role intersects with youth engagement and how youth lived experience enhances work in research, policy, and programmatic efforts.

Terrell first turned to Kathleen Ethier (Director of Division of School and Adolescent Health [DASH] for the Centers for Disease Control and Prevention [CDC]). Ethier noted that DASH works to use schools to support physical and mental health for young people and that the foundation of their work is information, “when the goal of your job is to help young people’s lives improve, hearing from young people becomes the most important thing you can do.” She explained that DASH has historically heard from youth through more traditional survey methods, focus groups, and user testing. Ethier suggested that within government agencies and in the broader field of child well-being youth voice has not been centered in the design of programs and interventions. As a result, Ethier argued, interventions are less useful and impactful than they could be. She expressed hope that the field is shifting towards deeper engagement and suggested, “I think what we have learned, and certainly what I hope we have learned at CDC, is that we have to include the communities that we are designing things for in the design, rather than designing it in the lab and then putting it out there and seeing if it works.” Reflecting on challenges around engaging youth, Ethier spoke specifically to leaders in government organizations noting that layers of bureaucracy can distance government officials from the populations they are meant to serve. One particular institutional barrier, she said, has been compensation—especially efforts to compensate a youth advisory board for their division.

Next, Marsha Judkins (State Representative for the Utah House of Representatives) explained that she engaged with youth lived experience in her role serving on social services and appropriations committees, as well as health and human services and law enforcement and criminal

justice committees. She noted that engagement with youth voices in the overlap of these issues made the importance of youth voice particularly clear. Judkins’ experiences have included chairing a committee focused on supporting families with system-involved children that included family and youth members. In considering the challenges of youth engagement, she emphasized the need to be intentional in creating spaces where youth feel comfortable. Young people, Judkins explained, may have experienced being labeled, blamed, and shamed, they may have been helpless in systems in which they have no control, or have been silenced. However, she emphasized, “there is such valuable insight that [young people] have, and that we can learn from.” She also noted the importance of identifying barriers to participation, citing her own realization that simple adjustments like holding meetings after school hours could allow for greater youth involvement.

Fred Dillon (Head of Advisory Services at Hopelab, a social innovation lab and impact investor) similarly highlighted the increased relevance and effectiveness of interventions designed in partnership with youth. He also noted the importance of engaging youth lived experience in efforts to address the complex intersection of mental health and technology, particularly young people who are LGBTQ+ and youth of color. Dillon suggested that youth voice was essential to efforts to retain the benefits and minimize the harms of youth online. In addition to their engaged work developing specific programs and products for youth, Dillon noted that Hopelab has also worked to develop broader supports for youth leadership. Most recently, they worked with 12 other funders to develop the Responsible Technology Youth Power Fund (a grant designed to distribute funding to organized that are youth- or intergenerationally led to ensure that tech is responsible in its design and implementation and reduces harm to youth). In considering challenges, Dillon echoed the tendency for adults and institutions to get stuck in their ways, as well as the need to be intentional about working with young people as partners throughout the life course of a project. Dillon also highlighted the increasing availability of resources for doing youth engaged work, including the Center for the Developing Adolescent at University of California, Los Angeles. The continued development of resources, he suggested, was particularly necessary to confront logistical barriers to youth engaged work, including considerations around consent processes, compensation, and data collection.

Finally, Leonard Burton (President of the Center for the Study of Social Policy) shared that his entire career has focused on adolescent development and the authentic engagement of young people. Burton urged organizations, companies, and institutions to tap into the genius of young people and to do so with an intentional infrastructure to support youth engagement. He suggested that some organizations may seek lived experience but be unprepared to support youth, and that those embarking on engagement should consider the investments that need to be made in their structure and institution to allow youth voices to be “authentically at the table and allow them to grow and help us to learn and grow as well.”

Panelists also offered several specific examples of research, program, and policy development in which youth voice directly contributed to a better-quality product. Burton described how input from youth living in a subsidized housing complex in Tennessee led to the city redesigning the location of a playground to make it more accessible and entertaining for those youth. He also offered the example from his time at the Jim Casey Youth Opportunities Initiative, that paired the launch of youth boards in ten communities around the country with $15,000 in grant funding to be distributed each year by youth to community organizations. Burton explained that youth developed their own criteria for evaluation that emphasized attention to accountability and outcomes.

Dillon explained how having young cancer patients directly involved in designing a video game, Re-Mission and Re-Mission 2, successfully engaged young people and contributed to improved adherence. He also described a digital tool, imi.guide, aimed at supporting young LGBTQ+ people to explore and affirm their identity, and to develop skills to cope with non-affirming or hostile experiences. In creating this tool, Dillon explained, Hopelab engaged with LGBTQ+ youth and LGBTQ+ community centers across the country.

Ethier discussed a project through which state school boards appointed youth members in multiple states. She explained that this “enhanced both the leadership skills of the young people but also brought a completely different flavor to those state board of education meetings” and allowed boards to take on projects utilizing student perspectives that provided new and valuable insights.

Judkins shared how speaking directly to detained youth about difficulties transitioning from juvenile facilities to adult prisons led her to champion legislative changes allowing more flexibility and alternative placements. These policy changes were directly driven by the insights gained from youth testimony. She also described a family-centered committee incorporating youth voice to coordinate community services and supports. Although funding ended, the input from youth and families was viewed as an invaluable component of the group’s work while it was active.

Ware asked panelists to specifically consider the challenge of engaging diverse youth voices, noting that it is often the case that the most elevated diverse voices of youth are those with exceptional cognitive ability, verbal ability, and academic achievement—as well as those from dominant cultures. Burton suggested aiming for balance in who is brought to the table and a called for a willingness among adults to be imaginative in thinking about who can contribute to the conversation. He echoed what the participants in the Models and Lessons session said, further advocating for greater flexibility in meeting norms, including around dress codes, which may require adult leaders to “get over our discomfort.” Dillon suggested that partnering with existing organizations who directly serve youth who are underserved or marginalized can be a key strategy for earning trust and achieving more inclusive engagement with youth voice. He offered an example of a project in which Hopelab worked with LGBTQ+ centers and other community organizations around the country to inform the development of a new digital product and noted that they provided compensation to both the individual youth participants and to the nonprofits.

Following this conversation, moderators invited speakers to consider how engagement with youth lived experience could be scaled and sustained. Ethier suggested that engagement must come to be expected and offered the example of federal agencies incorporating requirements for engagement in funding mechanisms for local and state programming. She also noted the value of scientific evidence around the impact of engaging lived experience, and called for continued and expanded research evaluating programs that engage lived experience. Judkins similarly suggested that requirements for youth voice could be incorporated in statutes governing state committees and commissions. On the topic of legislation requiring lived experience engagement, Dillon pointed out that the CARE act in the HIV field was “monumental” in its requirement that every city receiving funds create a council that included people living with HIV and AIDS to inform the allocation of those funds at the local level.

During the Q&A, an audience member asked whether decisionmakers had encountered people who don’t support youth voice and how those decisionmakers have responded to that opposition. Judkins shared that she had experienced that perspective among legislators, and suggested that finding common ground as well as telling a story were key to countering opposition. She explained, “narrative is everything […] if you can tell a compelling narrative and create an actual person for this other person to see their life, it’s really hard to go against that.”

Following this session, Walker-Harding offered closing remarks, highlighting the imperative of engaging youth as partners in shaping the landscape of research, programs, and suggesting that youth voices should serve as the compass guiding efforts to advance youth mental, emotional, and behavioral health. In closing, she expressed hope that the field would move forward more committed to “realizing a future where youth are not just heard but actively shaping their own well-being and world.”

REFERENCES

Anyon, Y., Bender, K., Kennedy, H., & Dechants, J. (2018). A systematic review of youth

participatory action research (YPAR) in the United States: Methodologies, youth outcomes, and future directions. Health Education & Behavior, 45(6), 865–878. https://doi.org/10.1177/1090198118769357

Kennedy, H., DeChants, J., Bender, K., & Anyon, Y. (2019). More than data collectors: A systematic review of the environmental outcomes of youth inquiry approaches in the United States. American Journal of Community Psychology, 63(1-2), 208–226. https://doi.org/10.1002/ajcp.12321

Ozer, E. J., Abraczinskas, M., Duarte, C., Mathur, R., Ballard, P. J., Gibbs, L., Olivas, E.T., Bewa, M. J., & Afifi, R. (2020). Youth participatory approaches and health equity: Conceptualization and integrative review. American Journal of Community Psychology, 66(3-4), 267–278. https://doi.org/10.1002/ajcp.12451

Shamrova, D. P., & Cummings, C. E. (2017). Participatory action research (PAR) with children and youth: An integrative review of methodology and PAR outcomes for participants, organizations, and communities. Children and Youth Services Review, 81, 400–412. https://doi.org/10.1016/j.childyouth.2017.08.022

DISCLAIMER This Proceedings of a Workshop—in Brief was prepared by Amanda Grigg as a factual summary of what occurred at the workshop. The statements made are those of the rapporteur or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Nia West-Bey, Center for Law and Social Policy. We also thank staff member Sheena Posey Norris for reading and providing helpful comments on this manuscript. Kirsten Sampson Snyder, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator.

WORKSHOP PLANNING COMMITTEE MEMBERS Leslie Walker-Harding, University of Washington and Seattle Children’s Hospital; David Willis, the Center for the Study of Social Policy; April Joy Damian, the Weitzman Institute; Kimberly Hoagwood, New York University School of Medicine; and Cheryl Polk, Independent Consultant.

SPONSORS This workshop was supported by contracts between the National Academy of Sciences and the Health Resources and Services Administration of the U.S. Department of Health and Human Services (HHSH250201500001I/5R60219F34017). Additional support came from the American Academy of Pediatrics, Children’s Hospital Association, Family Voices, Global Alliance for Behavioral Health and Social Justice, Society for Child and Family Policy and Practice, and the Society of Clinical Child and Adolescent Psychology. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

For additional information regarding the workshop, visit: https://www.nationalacademies.org/our-work/responding-to-the-current-youth-mental-health-crisis-and-preventing-the-next-one-a-virtual-workshop.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. The Science of Engaging Youth Lived Experience in Research, Practice, and Policy: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27529.

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