The State of Youth Mental Health
At the height of the COVID-19 pandemic, sharp increases in emergency department visits related to pediatric mental health emergencies led the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry to declare a “state of emergency in children’s mental health” (American Academy of Pediatrics, 2021). The academies tied this exacerbation to the isolation, loss, and uncertainty associated with the pandemic, which were disproportionately experienced by youth of color. They also acknowledged that youth mental health was already worsening prior to the pandemic.
Prevalence of anxiety and depression has risen steadily in recent years, especially among youth aged twelve-17. In 2016, the National Survey of Children’s Health estimated 10.5% of youth in this age group experienced anxiety. By 2022, prevalence of anxiety among youth aged twelve-17 increased to 15.8%, with 8.7% of adolescents reporting moderate or severe anxiety. Prevalence of depression rose from 6.1% in 2016 to 8.9% in 2022, with more than half (4.8%) of these youth reporting moderate or severe depression. While adolescent mental health needs have increased, families report greater difficulty accessing mental health resources. In 2018, 39.4% of families seeking mental health care experienced difficulty accessing treatment or counseling for their adolescent child. By 2022, estimates increased to 53.4% of those seeking mental health care (Child and Adolescent Health Measurement Initiative, 2016–2022).
The Centers for Disease Control and Prevention Youth Risk Behavior Survey explored mental health trends among high schoolers in survey data collected from 2013 to 2023. Among those surveyed, 40% reported “persistent feelings of sadness or hopelessness” in 2023, compared to 30% in 2013 (CDC, 2024, p. 56). The 2023 estimates were highest among female youth (53%), American Indian or Alaskan Native Youth (45%) and LGBTQ+ youth (65%) (CDC, 2024).
In response to this data, the CDC emphasized that increasing connectedness, fostering relationships, and creating safe environments can help mitigate the effects of poor mental health (CDC, 2024, p. 4). Especially in the midst of a mental health professional shortage, enhancing school and community connectedness holds potential both as a positive influence and possible lifeline for those struggling to access mental health care (Health Resources and Services Administration, 2023). Youth participatory action research (YPAR) is a potential solution. YPAR fosters connection, empowers youth members, and operationalizes youth expertise to identify innovative, community-embedded solutions (Nash, 2023). In our mental health YPAR initiative, we support positive youth development within the research process and aim to identify novel interventions that promote the mental wellbeing of both our youth co-researchers and their peers.
In this paper, we will outline the process of the creation and operation of the TWT, our research planning and data collection and analysis experiences, and key lessons learned from the perspectives of all team members.
Youth Participatory Action Research
Youth participatory action research involves young people as co-researchers, not merely study participants, in question generation, knowledge construction, and corresponding action(s) to address social issues (Anyon et al., 2018). The three guiding principles of the process are (1) including youth in the various processes, (2) incorporating inquiry-based components, and (3) grounding work in youth experience (Rodríguez & Brown, 2009). Therefore, YPAR is research done with, not on youth. This approach challenges traditional research processes and can increase validity as these processes are developed and reviewed by youth and, thus, may more accurately represent youth populations (Caraballo et al., 2017). Additionally, YPAR is traditionally done in school settings and often focuses on issues related to school climate and educational equity (Anyon et al., 2018). However, there is increasing interest in using the approach to address health equity, as well as to engage in settings beyond school systems. For example, there is some literature regarding YPAR for health promotion research in community-based settings, which reports on best practices for YPAR processes in these settings (Lindquist-Grantz & Abraczinskas, 2020).
Given these guiding principles and increasing interest in using YPAR to address health issues beyond the school setting, the Teen Wellness Team (TWT) was established by researchers at a university medical center and informed by community feedback. The TWT takes an inquiry-based approach to amplify the perspectives of historically marginalized youth, to explore mental health disparities through a research process involving youth, and to generate actionable solutions. The research team includes five adults and three young people; although four youth members were initially recruited, one member could not regularly attend meetings due to other commitments. The majority of youth (75%) and adult (80%) team members identify as people of color and represent diverse fields of interest and expertise—adolescent lived experience, pediatric medicine, public health, nursing, education, community organizing, and emergency medical services.
Positionality
Given that acknowledging and mitigating the effects of power dynamics is a key principle of YPAR, we will briefly discuss our positionality in order to frame the perspectives—and attendant expertise, biases, and limitations—that inform this paper. Merriam and Tisdell (2015) define reflexivity or researcher positionality as “critical self-reflection by the researcher regarding assumptions, worldview, biases, theoretical orientation, and relationship to the study that may affect the investigation” (p. 259).
FC: I am a South Asian, queer, chronically ill pediatric cancer survivor and was a member of my children’s hospital’s youth advisory council throughout my adolescence. Now as a medical student and TWT coordinator, I experience YPAR from the adult perspective. I aim to empower the youth I work with while also reflecting on how my identities, socioeconomic status, and life experience influence my approach to this work.
JF: I am a Black female qualitative researcher and educator who has facilitated YPAR in and out of school for the past four years. As a practitioner, I emphasize the dynamic interplay between content, context, genuine relationship-building, reciprocity, and cross-cultural awareness to foster and maintain effective partnerships. Even though I have not worked directly with mental health research, I used my past experiences to support the technical training and social relationships of the Teen Wellness Team. I regularly self-reflect on how my identities help or hinder the progression of the TWT and how I can lean into my team’s strengths to balance my weaknesses.
KG: I am a recent MPH graduate with a background in emergency department nursing. I recognize that my experiences as a White, able-bodied, middle-class, queer woman impact my work and perspectives as a Teen Wellness Team coordinator. Having graduated high school before the COVID-19 pandemic, I acknowledge that the lived experiences of today’s adolescents differ from my own. In this YPAR initiative, I aim to center and uplift youth voices, especially those of LGBTQ+ youth and youth of color, bearing in mind that my identities and socioeconomic status impact my actions, intentions, and interpretations as a researcher.
AG: I am a foreign-trained physician with experience in primary care and emergency procedures. I recognize that my background as an able-bodied, middle-class, Asian woman influences my perspectives as an adult researcher participating in the Teen Wellness Team research. While I witnessed firsthand the mental health effects on adolescents during the COVID-19 pandemic, I aim to approach this experience with an open mind. I acknowledge that the participants’ experiences may differ from my own and will strive to amplify the voices of the youth, staying aware of how my age, identities, experience and socioeconomic status limit my approach as a researcher.
LN: I acknowledge that my identity as a White, middle-class, able-bodied, queer, 29-year-old female PhD student and former teacher without children impacts the lens through which I approach the outlined research questions, source selection, as well as interpretation. For example, as a non-parent, I do not have experience guiding my own children through mental health challenges. Additionally, while I was in high school somewhat recently, there are still generational divides that shape the experiences of myself and the participants differently. I plan to approach the experience with humility and to uplift the voice of youth while questioning my interpretations throughout the research process (Merriam & Tisdell, 2015; Milner, 2007).
JG: I am a young Black woman, oldest sister, only female sibling, and an EMT student. I am one of the amazing youth members and multiple researchers in the TWT. I have had mental health struggles in the past and never knew or was too scared to open up about those struggles. I was very interested in being in this group so that not only could I help my peers, friends, and family overcome the struggles I faced, but to help all of the young adults around me.
BG: I am a fluent Spanish-speaking, Mexican-American, young woman. I continue to pursue a higher education while also working with the community. It is important to my culture and community to learn about mental health, the stigma, and the different support systems. This research exposes to the community and me the resources available. The knowledge I have about the surrounding community and the culture in that community can help the research team have insight in the needs and stories community members have.
IM: I am a Black, U.S. American Creole, and queer mother, partner, writer, and general academic pediatrician with additional training in public health. I am the principal investigator of a lab focused on pediatric socio-emotional health and youth empowerment. One of the lab’s central projects is the Teen Wellness Team. While I share some identities with youth who have worked on the TWT, my age, socio-economic status, and academic positionality inform and limit my approach to research.
Methods
Developing the TWT
The principal investigator (IM) and two team coordinators (FC and KG) initially developed the TWT. They devised the following plan to recruit youth researchers in a youth- and community-centered way. The team collaborated with a YPAR expert consultant (JF), who adapted existing YPAR curriculum materials for the future youth members. These resources included the University of Virginia’s YPAR Nexus, the University of California Davis’ Stepping Stones YPAR Toolkit, and the University of California Berkeley’s YPAR Hub (Nolan et al., 2023; UC Davis, n.d.; UVA School of Education and Human Development, n.d.). Through partnerships with integrated Translational Health Research in Virginia (iTHRIV), a statewide, inter-institutional research hub, and the Latino Health Initiative (LHI), a community partnership to reduce health disparities in the Latine community, the team held meetings and Community Engagement Studios (Joosten et al., 2015). At these gatherings, adult team members presented recruitment plans and materials and community members, including youth, parents, child mental health professionals, and community health workers provided feedback. This included how best to frame the research opportunity to youth, how and where to distribute recruitment information, how to obtain parental consent, youth compensation, and incentives to keep youth engaged.
The adult researchers met with the Office of Youth Protection (OYP), a university resource that works to ensure appropriate oversight and compliance for programs involving minors, to register the TWT. This involved a training process for adult researchers, background checks, and gleaning feedback and advice about how to safely engage the youth collaborators. The OYP advised the team on methods of compensating youth, meeting logistics, and obtaining parental or guardian permission for youth participation with sensitivity to individual youth’s backgrounds, including culture, gender, and sexuality. Throughout the research process, the team involved the OYP when relevant questions arose.
The team then designed a recruitment flyer, developed a holistic online application form focused on potential youth participants’ interest level, characteristics, and skillset, and partnered with local high school guidance counselors and the LHI to disseminate the application to youth (see Appendix A for English and Spanish flyers). A research lab-specific email account was set up to communicate with youth and community members.
Running the TWT
The primary modes of communication with the youth are via the lab email and a secure messaging application, Remind, which was recommended by the OYP. Initially only email was used, but discussions with the youth members led to the addition of Remind, a more accessible, secure messaging app. With the youth’s permission, adult team members sometimes communicate with parents to provide an additional layer of communication, which has helped sustain youth participation.
The TWT meets monthly in a community meeting space at a university center focused on tangibly redressing inequality through university-community collaborations. All meetings are hybrid, with in-person and virtual options as needed. The center has audiovisual capabilities to allow for effective communication and projection when participants or guest speakers join virtually. Due to the youth’s schedules and other activities, future meeting times are discussed at the end of each meeting or electronically between meetings. The frequency of the meetings is subject to change based on members’ schedules, holidays and the phase of research. For example, TWT increased meeting frequency for Collaborative Institutional Training Initiative (CITI) program training and for data collection training, which are time-consuming and time-sensitive activities.
Another example of breaking the usual meeting format was a half-day workshop. In this workshop, the team finalized the research question, hosted a guest speaker, and facilitated bonding through a zine workshop led by local art activists. Zines have long been used by youth as a means of self-publishing and representing their ideas in adult-dominated media spaces (Chu, 1997). More recently, the action initiative in some YPAR projects has culminated in zines that enact community change (Nolan et al., 2021; People In Education, n.d.). We used zines to break up the more technical portion of the longer meeting and to introduce the youth to the idea of an action step. The activists who led this workshop had experience with political advocacy using pocket zines, which they distributed at the workshop, and they brought various art supplies, and encouraged the youth to be creative.
Each monthly, two-hour TWT meeting begins with a reflective opener where all members take a few minutes to draw with colors that reflect their moods. We then share their colors and the stories behind them, which allows us to begin each meeting with intention, openness, and mutual trust. Then, for the majority of the meeting, the team typically engages with part of the adapted YPAR research curriculum relevant to our current phase of research (see Table 1 for curriculum activities organized by monthly meetings). Approximately every other meeting, the TWT hosts a guest speaker chosen based on the youths’ interests.
At the end of each meeting, we have a dedicated “wrap-up” session where we discuss feedback for this meeting as well as plan for the next meeting. Youth are equitably compensated commensurate with adult team members’ wages. Gift cards are the mode of compensation for the youth members as they are one of the few ways we could compensate participants without collecting their personal details such as social security numbers. We chose prepaid Visa gift cards as they are accepted by most merchants including those online; furthermore, our university has an established system for disbursing these gift cards as community member compensation in research projects. The cards are either distributed at the end of each meeting or are mailed to youth’s home address if they joined virtually.
Every other week, the adult research team meets virtually to plan the TWT monthly meetings. At the biweekly meetings, we complete the agenda based on the youth’s input at the prior TWT meeting and phase of the research, create and review curricular materials, and assign roles for adult members to facilitate the different parts of the TWT meeting. At all meetings, notes and minutes are taken by an adult member.
Due to the level of coordination required for the TWT members, community center, and other partnering organizations and individuals, AG joined the team as a research assistant to facilitate these logistics. During various phases of the research curriculum, such as education and training on qualitative interviewing, LN and others with relevant expertise also joined.
Research Planning
In brief, from March 2023 to May 2024, the team developed an IRB-approved qualitative study and partnered with a local school system to conduct interviews with high school students. From May through December 2024, the team conducted interviews and is now in the process of data analysis. More granular information regarding research planning is included below.
The first TWT meeting was held in March 2023. By August 2023, the TWT had finalized the following research question: “What do high school students say are the best ways to support their mental health in our community?” The period between March and August also included increased education about YPAR and research processes due to the steep learning curve for the youth researchers who had never designed a study. By October 2023, the team had selected semi-structured interviews as the qualitative research method and a local school system as the preferred participant recruitment and data collection community partner. In December 2023, focus groups were added as a research method as suggested by a colleague and YPAR expert. Participants could choose between an individual interview or a focus group based on their preferences.
The research curriculum builds upon itself. The beginning stages included an introduction to YPAR and the development of a research question over the first seven meetings. Over the next seven meetings, the TWT learned about and chose research methods and identified the study population. Simultaneously, the team worked on a research protocol, which was submitted to the IRB and approved. The school system required an application for research partnership, which the team submitted. Once we had received approval from both the IRB and school system, the team could begin recruiting and conducting data collection with students in the schools. Given the evolving nature of the study, including the addition of adult team members and updates to consent and interviewing logistics, the IRB required addendums. Relatedly, youth researchers were added as study members to the IRB protocol after completing the required relevant Collaborative Institutional Training Initiative (CITI) certification. CITI training modules are targeted toward adult researchers, so the adult researchers adapted the training and implemented a youth-centered version. The adaptation included audiovisual storytelling and information delivery, incorporation of relevant examples, and interactive discussions to boost comprehension as well as retention of key concepts in safeguarding human subjects. Two of the youth researchers completed CITI training and were added to the IRB.
Ongoing Data Collection and Analysis
Through the partnership with a local school system, the TWT worked with guidance counselors to coordinate participant recruitment and data collection at two schools serving children ages fourteen-17. Recruitment entailed tabling during school lunches, study halls, and a school event, with flyers and candy where students would approach the adult and youth researchers. The flyers contained brief information about the study and a QR code linking to the consent form that students’ parents or guardians would complete virtually (see Appendix A for the flyer). Physical consent forms were also offered to students. The adult researchers called and emailed parents and guardians who had completed the consent form to confirm that they had read it and to give them an opportunity to ask questions. During the academic school year, individual interviews were conducted in the guidance counselor conference rooms at one of the schools.
During the summer, recruitment moved to youth-serving community locations and clinical sites, where flyers were posted or distributed to adolescents. Participants were given the option of virtual interviewing during the summer to accommodate travel schedules and to bypass coordinating physical location logistics. 18 in-person interviews were conducted at the time of submission. Focus groups were not conducted because the majority of participants preferred individual interviews, and there were not enough participants interested in focus groups to hold one.
Data analysis is ongoing. We have dedicated time in the monthly TWT meetings for data analysis training, synchronous thematic coding of interviews, and theme reconciliation. We first created a codebook over the course of several group discussions and practiced coding fake transcripts in order to familiarize all team members with data analysis. We use a deductive approach to thematic analysis with the software Dedoose. At least two team members independently code each transcript and then meet to reconcile differences. Conducting a portion of the data analysis during our monthly meeting time has maximized youth member participation. The remainder of the coding and reconciliation is completed asynchronously. We plan to summarize major and minor themes through future group discussions and member checking with the youth researchers.
Sharing Our Process and Progress
While the research is ongoing, the processes of community partnership and team-building have been documented and disseminated. Notably, the youth researchers have had the opportunity to co-author all posters and manuscripts, including the current paper. One youth member presented a workshop on YPAR at a national conference, along with two adult researchers.
The youth researchers co-authored a blog post for Youth-Nex, our institution’s multidisciplinary center for positive youth development, which consists of their experiences with and perspectives on YPAR (Guzman-Cornelio et al., 2023). The TWT also shared its progress through a poster presented at a local pediatrics research conference.
Lessons Learned
All authors independently reflected on lessons learned through their work with the Teen Wellness Team, and responses were collated and organized thematically by the principal investigator (IM). All team members then reviewed the identified themes and provided feedback to refine them.
The first theme that emerged was that the time-consuming nature of YPAR requires team flexibility and patience. For the TWT, building trusting relationships, collaboratively designing research, crossing bureaucratic hurdles, especially with youth co-researchers and participants, and implementation took more time than initially anticipated. Specific examples of such challenges include completing and adhering to the OYP and IRB protocols for youth protection, creating a research question and protocol while simultaneously teaching a research curriculum, and troubleshooting when participants do not show up for interviews. Moreover, the TWT members’ schedules changed throughout the academic year, requiring flexibility in meeting times and modalities. The formation of a YPAR team should be viewed as a meaningful outcome in and of itself. As such, adult team members should take care to develop and draw upon their relationships in the community to build and sustain a YPAR group—work that begins long before youth team members are recruited. For instance, adult team members sought community feedback in order to refine our goals, process, and recruitment strategy when forming the TWT, including from Latino Health Initiative, with which IM had a long-standing working relationship (see Methods for details). Furthermore, adequate time is essential to completing steps such as IRB protocol approval, community research partner approval, and other institutional regulatory necessities.
In response to the first lesson learned, maintaining flexibility was a necessary second theme we identified. At the outset of the TWT, we maintained a flexible approach to team logistics and the research itself. While we set ambitious deadlines, we quickly found coordinating meetings and asynchronous work outside of monthly meetings to be challenging. Youth have many competing commitments and autonomy to prioritize their commitments as they wish. Thus scheduling interim TWT meetings or dedicating time for these tasks in the regular monthly TWT meetings proved to be most effective. A specific example of such a task is data analysis, to which we have dedicated significant portions of several monthly meetings. Another example of flexibility with deadlines is with data collection. We had planned for data collection to be completed by the end of the academic year. The IRB approval process took longer than we had anticipated, leaving limited time to collect data during the remaining school year, so we adjusted our deadline to complete the interviews during the summer and following fall semester. We also tried to be flexible about the research itself. While we had a broad research topic from the outset of this work (adolescent mental health), adult team members deferred to youth when deciding on our specific research question, study population, data collection instruments, and recruitment strategies.
Adult team members highlighted the importance of addressing and combating internalized adultism. In order to do this, we practiced deferring to youth on final decisions, learned to become comfortable with silence during meetings as youth processed and brainstormed, and addressed all team members by our first names rather than using titles. We budgeted compensation for youth’s participation, so all team members’ contributions were clearly valued equally. Finally, adult researchers tried to remain aware of power imbalances and encourage youth participation. This took the form of posing questions rather than declarative statements during meetings, when possible, as well as allowing youth to lead research processes, such as conducting interviews with adults there as support.
From the youth perspective on adultism, JG appreciates the existence of a group like the TWT where adults and young people can talk about a traditionally “adult” topic like mental health. She says, “I feel like coming in here and talking to all of y’all is refreshing especially…[because] when…I was younger [I was] told to ‘stay out of grown folks’ business’ like mental health. I felt like I couldn’t talk about it. This group helped me talk about these hard topics and it’s not really grown folks’ business.” BG compared YPAR with traditional scientific research’s hierarchy. “Here, I don’t feel like a burden. We’re just having one big conversation. There is no kids’ table or adult table—we’re all just eating together. I’m able to love research more—it’s not about age or credentials. Everyone is inclusive.”
Interdisciplinary collaboration is critical to the success of the TWT. Adult researchers represent learners and practitioners from education, psychology, medicine, public health, and nursing. We sought collaboration and mentorship across multiple schools and departments at our institution, utilizing the knowledge and resources of more senior researchers from the fields of education, psychology, and adolescent medicine. Our collaboration with the community center offered community connections, physical space, and other resources. Having various team members across organizations allowed us to tap into a broader community network. Additionally, our team was able to bring diverse skills to the process. For instance, we had members with expertise in youth mental health from medical and public health perspectives, which was useful for coordinating speakers, guiding protocol writing, planning for participants’ safety, and more. Others with experience in education research helped with logistical components (e.g., social science IRB, school district partnership, and youth protections protocols), and adapted YPAR curricula. Furthermore, all contributed to forging an understanding of adolescent mental health that incorporated an interdisciplinary lens (medical, social, developmental, etc.). These perspectives strengthened our research both conceptually and practically.
Youth members viewed the interdisciplinary collaboration as valuable both for acquiring a deeper understanding of the research process and for exposure to potential careers. JG enjoyed hearing guest speakers’ and collaborators’ perspectives and feedback on our work as “it has helped me understand what we’re doing, like the questions we ask, what we want from these questions, and how to dive deeper and get the answers that we’re looking for.” She has applied her knowledge of how to create strong research and interview questions to her teaching assistant role in an emergency medical technician class and in her personal life. BG has learned about different career paths, remarking that “getting to listen to guest speakers and their careers in healthcare” showed her that “research is not just for one career.”
Finally, a strong focus on effective youth engagement has been central to our operations as a team. Our multi-pronged communication strategy (see Methods) provides multiple layers of support to help youth remain engaged, including through communication with parents and guardians. We also sought youth team members’ input in planning meetings and adapting the YPAR curriculum, including the selection of guest speakers. We adapted the IRB-required CITI research ethics modules for an adolescent audience, based on their preferred methods of information delivery and learning. This has ensured sustained participation over the course of nearly two years. Youth team members reported that this engagement has resulted in significant knowledge- and skills-building around mental health, study design, and qualitative data collection.
Conclusion
This case study described practices utilized to successfully apply YPAR in an out-of-school setting. The TWT is based in an academic medical center and utilizes many university-affiliated community resources. Although YPAR is meant to engage beneficiaries at every stage in the research process, logistical challenges make this goal difficult to achieve. Interdisciplinary and cross-university collaborations have helped us address these challenges. Despite this initiative being health-focused, our members have diverse backgrounds and expertise that has facilitated our success thus far, as a YPAR approach requires multiple types of expertise and disciplinary perspectives.
We also discussed specific methods for applying YPAR tenets to discrete parts of a mental health study, from research question selection to data collection and analysis. Adult and youth researcher perspectives are included in this case study, which further highlights how YPAR supports effective youth development. We hope the TWT’s experiences can galvanize others in healthcare settings and community-based, non-scholastic spaces to consider YPAR as a meaningful way to address complex pediatric health issues.