Engaging Youth with Lived Experience in Clinical Science: Key Challenges and Potential Strategies

Abstract

Centering the perspectives of youth with lived experience (YWLE) in psychopathology is critical to engaging in impactful clinical research to improve youth mental health outcomes. Over the past decade there has been a greater push in clinical science to include community members, and especially community members with lived experience, in all aspects of the research process. The goal of this editorial is to highlight the need for and importance of integrating YWLE into every stage of clinical science research, from idea generation to interpretation and dissemination of research findings. We identify five key problems associated with pursuing research on adolescent mental health without involvement of YWLE and propose strategies to overcome barriers to youth engagement in clinical science research. We conclude with a call to action, providing guidance to clinical scientists, institutions, and funding agencies in conducting research on youth psychopathology with YWLE.

Introduction

Centering the perspectives of youth with lived experience (herein, “YWLE”) in psychopathology is critical to engaging in impactful clinical research to improve youth mental health outcomes. Despite steady increase in research attention and funding priorities on youth psychopathology, very little progress has been made in (1) reducing the burden of mental health problems in youth (Polanczyk et al., 2015), (2) improving psychotherapy outcomes for youth (Eckshtain et al., 2020; Weisz et al., 2017), or (3) lowering risk for youth suicidal thoughts and behaviors (Fox et al., 2020). There are many factors that likely have limited progress. One critical factor is the long-term exclusion of youth perspectives from the clinical science process, and particularly YWLE with psychopathology (Schleider, 2023).

The goal of this editorial is to highlight the need for and importance of integrating YWLE into every stage of clinical science research. We identify five problems associated with pursuing research on adolescent mental health without involvement of YWLE and propose strategies to overcome barriers to youth engagement in clinical science research. We conclude with a call to action, providing guidance to clinical scientists, institutions, and funding agencies in conducting research on youth psychopathology with YWLE.

Why engage youth with lived experience in clinical science?

Historically, those with lived experience have been excluded from the clinical research process outside of serving as participants. Clinicians and scientists were considered the primary experts in psychopathology (Schleider, 2023) and there is a long history of individuals enduring harm and involuntary experimentation (targeted at communities most often excluded and minoritized). Broader involvement of YWLE and their families across all stages of the research process is a critical step to both repair trust and to prevent further harm. Moreover, including YWLE throughout the research process is a mechanism to advance equity, to promote anti-racist practice (Ozer et al., 2022), and to help ensure research prioritizes the goals and perspectives of the communities we hope to impact with our clinical science (Augsberger et al., 2023).

Adolescence is a period characterized by development of agency and autonomy. Yet, young people are not provided with agency or autonomy in most research contexts. Youth do not have a say in which research questions are pursued. Nor are they involved in treatment development, testing, or implementation. These choices perpetuate a cyclical norm in the clinical science community that may lead well-intentioned researchers to undervalue the perspectives of adolescents, to inadvertently ignore topics most important to adolescents, and even to erode trust with adolescents. Prior efforts to include adolescents in processes typically governed exclusively by adults suggests that their inclusion can improve outcomes. When adolescents are involved in healthcare decision-making, their engagement and response improves, and when adolescents can consent to sensitive healthcare without parents/guardians, access increases (Kerwin et al., 2015). Yet, this is not the norm in research on adolescent psychopathology. We argue that clinical science should follow suit and allow adolescents agency and explicit input in research contexts.

Existing approaches to engage lived experience perspectives

Over the past decade there has been a greater push in clinical science to include community members, and especially community members with lived experience, in all aspects of the research process (NIH Principles of Community Engagement Second Edition Report, Publication No. 11-7782, 2011). Social work, community psychology, counseling psychology, and public health provide exemplary examples of meaningful engagement in community based participatory research (CBPR) to improve health and mental health outcomes (Augsberger et al., 2022; Ozer, 2017; Ozer et al., 2020; Sprague Martinez et al., 2020; Wallerstein et al., 2017). Although a full review of these approaches is beyond the scope of this paper, clinical science can and should learn from our colleagues in these adjacent fields.

Clinical scientists have begun to make strides in adopting CBPR approaches (Heffernan et al., 2017; McCabe et al., 2023). Including community members in research has led to greater participation of racial and ethnic minorities in clinical trials (McFarlane et al., 2022), decreased sample attrition and selection bias, and improved intervention effectiveness (Collins et al., 2018). There also is increasing understanding that it is both common and useful when clinical psychologists with lived experience of mental illnesses are involved in self-relevant research (Kerwin et al., 2015).

Even fewer clinical scientists directly engage the perspectives of YWLE. In a recent review on this topic, Sellars and colleagues (2021) found that fewer than 1% of studies included youth voices in the research process. Youth Participatory Action Research (YPAR) is a form of CBPR that provides a framework to involve youth in research and action, including youth with lived experience (see Table 1). Prior research shows YPAR increases youth social justice awareness, social and cognitive development, perceptions of agency, and strengthens relationships with adults and the community (Shamrova & Cummings, 2017).

Table 1.

Key principles of Youth Participatory Action Research

(1) Selecting research topics based on youths’ lived experiences, concerns, and interest

(2) Involving of youth as collaborators in research methodology (i.e., development of research questions, data collection, data analysis, and interpretation of findings)

(3) Partnering with youth in dissemination and action to promote positive youth and community impact

(4) Shared power between researchers and youth

(5) Elevating youth as experts in their own experience

Helpful References: Anyon et al., 2018; Cammarota & Fine, 2010; Ginwright et al., 2006; Kirshner, 2007; London et al., 2003; McIntyre, 2000; Mitra, 2004; Ozer & Douglas, 2015; Rodríguez & Brown, 2009.

There have been promising efforts to involve YWLE in clinical science. This work primarily has involved qualitative interviews with adolescents with lived experience of various mental health concerns (e.g., Jakobsson et al., 2022, Kristensen, 1995; Latakiene & Skruibis, 2015; Meaux et al., 2006; Sibeoni et al., 2017). Although important in their own right, these approaches do not embody all YPAR principles. YPAR requires intentional partnership with youth across the entire clinical research process.

To do this requires a shift in the culture and priorities of researchers, academic institutions, and funding agencies (Teiziera et al., 2021). Moreover, to do this work well requires intentional incorporation of partners across the clinical research process, necessitating a paradigm shift in the typical framework and timeline of the research-product pipeline. Embarking on these partnerships requires an understanding and acknowledgement of inherent power dynamics and structures, the history of harm done by researchers in the past and a vigilance towards potential harm enacted moving forward, and a genuine willingness to listen to and engage with adolescents.

The current paper

We highlight five problems within clinical science that can be addressed by incorporating the perspectives of YWLE. In response to each problem, we provide strategies that involve actively engaging YWLE of psychopathology (see Table 2). Just as the perspectives of adolescents with lived experience should be central to the research process, so too were their perspectives central to this editorial. The Recognizing and Enhancing Adolescent and Community Health (REACH) Youth Advisory Board is composed of seven adolescents (ages 16–18) all of whom have lived experience with depression, self-harm, or suicide. The REACH Board serves as an advisory board to five of the authors (AB, RVC, HL, JH, KF) who meet monthly to provide input and feedback on our programs of research and our research methods (for more information, visit reachboard.org). The REACH Board co-authored this editorial. They helped to identify the key problem areas and potential strategies discussed below. Where possible, we directly quote REACH Board members to capture their perspectives without interpretation, and we include a figure the REACH Board created guiding researchers on how to create a youth advisory board for research in the Supplement of this editorial (Supplemental Figure 1). All REACH Board members also had the opportunity to review and revise this editorial prior to publication. Our role as clinical scientists is now to amplify their perspectives and to take real action towards addressing the issues outlined below through the strategies they suggested.

Table 2.

REACH Board perceptions and comments related to key problem areas in youth mental health research.

Domain	Problem Areas	Board member quotations on problems and potential strategies for improving research processes
Idea Generation	Relevance and importance of research topics	“The issues that adults deem as important or unimportant may be completely different than the most important and common issues to teens because of the generational gap.” “Some ways research questions are phrased villainizes teens. Researchers present data and questions in a way that blames teens.” “[Adults] focus on one specific factor that influences teen mental health and not the surrounding system that causes that issue.”
Research Methods	Representation in participant samples	“Teens from different backgrounds, like adults, have different problems because of their circumstances and identities. If you only look at one group, you miss other issues.” “…today’s teens, if you are reaching out to these groups–it is important that you are a non-threatening presence. Having someone who is in that demographic (e.g., teen who works in your lab) is really important!” “Talking to those groups [with underrepresented voices] about how we can do more research and elevate their voices”
Measurement	Selection and measurement of study outcomes	“[demographic questionnaires] still ask about gender identity while not having a full understanding of how teens are interpreting gender in this day in age.” “Different terms or perspectives on mental health issues may feel less relevant to teens today than they were for adults when they were younger.” Surveys “Might have questions with terminology the [a] teen may not be familiar with [anymore]” “You might ask a teen how often they stay up past a certain time, and then conclude that teens are struggling with insomnia, or their phones are keeping them awake. But there might be lots of reasons.” “Teen feedback ensures that these surveys improve. I get that using one survey over a long period helps get important data but finding new ways to ask the same question is vital.”
Data Analyses & Interpretation	Presentation and characterization of research study findings	“Researchers might misinterpret the MEANING of behaviors and draw conclusions that don’t really capture the function or reasons behind behaviors.” “[Researchers may] miss out on focusing on what really matters to teens in the study, they know what’s important to them and researchers might not.” “It’s helpful to give teens an opportunity to say things out loud and work through the interpretation and meaning with the researchers--especially if the study is upsetting” “Collaborate with teens to communicate results in a way that makes sense to other teens, this would involve informing teens what research language means during collaboration” “Offer compensation to teens who already participated in the study to review the results with researchers”
Dissemination	Accessing and understanding research findings	“Most of the time, researchers want their findings to influence mass audiences. But if the audiences can’t comprehend the findings, then will it influence them?” “If researchers really want their studies to influence people, [research findings] have to be accessible. I get that the system is designed to be inaccessible and we can’t immediately change it, but not everyone can access it. This makes it hard to get the research out there.” “Any teenagers trying to find research papers in their own time to address their own problems or find solutions might be confused by the jargon used.”

Problem 1: Adolescents are not involved in generating research ideas about adolescent mental health.

As clinical scientists, we aim to identify research questions that, if answered, would have the most critical impact on the mental health outcomes of adolescents. The inclusion of YWLE in identifying research questions about their mental health is key to making such an impact. This is applicable to both clinical intervention and non-intervention research. Continuing to develop research questions on the etiology, course, and outcomes for youth mental health without the perspectives of youth may push mental health prevention and intervention efforts in directions that are misaligned with adolescents’ needs, promoting solutions youth do not want to engage with or do not find helpful. As stated by a REACH member, “The issues that adults deem as important or unimportant may be completely different than the most important and common issues to teens because of the generational gap.” Another board member added, “[Adults] focus on one specific factor that influences teen mental health and not the surrounding system that causes that issue.” Adolescents’ perceptions of mental health research are important, and failing to systematically seek out their voices may lead to missed opportunities. The average timeline for the research to practice translation, though variable, is already nearly two decades long (Morris et al., 2011). Without identifying the most salient and relevant research questions, ultimately our research is at a disadvantage in terms of its potential real-world impact.

The scientific communication of our research aims and agendas may also limit youth engagement. We may invalidate adolescent experiences in how we approach and present our clinical research questions, further eroding trust and limiting youth interest in participating in research. Many YWLE on the REACH YAB have participated in psychological science studies on youth mental health. One such YAB member noted, “Some ways research questions are phrased villainizes teens. Researchers present data and questions in a way that blames teens.” Further, our communication and presentation of research questions has important implications for how mental health topics are described in the media and viewed by the broader public–which may be the only information accessible to adolescents, shaping their perceptions of the field. We stand to gain tremendously by aligning our research questions with adolescents’ identified needs, values, and experiences.

It is critical that youth with lived experiences define research priorities. Simply stated, we need to directly ask youth: What questions should we be asking to better understand youth mental health? What do you wish people (e.g., researchers, teachers, parents/caregivers, the media) knew about mental health and the teen experience? To do this, we must intentionally involve adolescents with lived experience from the beginning of the research question generation process.

Problem 2: Adolescents with marginalized identities are not participating in research on adolescent mental health.

It is well-established that research on adolescent mental health has largely been limited to samples that identify racially as White and hail from high-socioeconomic status backgrounds (Cha et al., 2018). For example, higher socioeconomic status families may have more resources available that make participating in research easier and more accessible, such as time off work and transportation. There have been calls for clinical scientists to increase diversity in research samples. The National Institute of Mental Health (NIMH) has “minimum standards” on the reporting of race and ethnicity data (NOT-OD-01-053, NIMH, 2001); they now require that samples represent the demographic makeup of the larger community in which they are drawn. Further, some journals require reporting of the representativeness of the study sample. These policies increase transparency about the representativeness of our research samples but will not alone address the lack of representativeness in who is participating in our clinical science. Lack of representation fails to capture the experiences of adolescents with minoritized identities who are often at heightened risk for mental health concerns (National Academies of Sciences, Engineering, and Medicine., 2022) and have lower access to mental healthcare (Goodman et al., 1997). As REACH members voiced, “teens from different backgrounds, like adults, have different problems because of their circumstances and identities. If you only look at one group, you miss other issues.” Failing to incorporate diverse adolescent perspectives intentionally and systematically in clinical science continues to limit generalizability of research findings and their potential benefits. Researchers must rebuild trust with populations who have historically been harmed by clinical science. Intentional efforts must be made to create safe, inclusive, and accessible environments for research participants.

There is a clear need to increase representation of diverse adolescent perspectives in research on mental health. REACH members encouraged researchers to “specifically target individuals/groups that are commonly underrepresented” in their recruitment efforts. In order to reach more diverse adolescents, and in particular, those adolescents representative of the populations at highest risk for mental health concerns or most in need of mental health services, we must ask and engage the people we are trying to reach directly. “Talking to those groups about how we can do more research and elevate their voices” is crucial, REACH YAB members said. Ultimately to connect with adolescents from a range of identities, we must consider adjusting our recruitment methods and carefully consider barriers, such as the requirement to include parents/guardians in adolescent-focused research, to ensure we meet youth where they are.

Problem 3: Methods and measures used in adolescent mental health research are not always aligned with adolescents’ experiences.

A key value in clinical science is empirical assurance that our measures are valid and reliable in the populations we study. Many measures that assess youth psychopathology are not, however, (1) validated in samples that are representative of the current, and continuously changing, population demographics (Jones, Marks, Ramirez, & Rios-Vargas, 2021; Vespa, Medina, & Armstrong, 2018, 2020) and (2) re-evaluated for their continued psychometric performance (Simmons, Wilkinson, & Dubicka, 2015) and relevance to youth populations over time. Compounding this issue is the fact that most widely used measures of youth psychopathology do not report youth input as a part of their development.

Many interviews, surveys, and interventions for youth psychopathology are downward extensions of tools used with adults and may not be developmentally or socially normative. Members of the REACH Board noted that “[demographic questionnaires still “ask about gender identity while not having a full understanding of how teens are interpreting gender in this day in age,” that “different terms or perspectives on mental health issues may feel less relevant to teens today than they were for adults when they were younger,” and that “questions may be asked in a way that is not inclusive in a way a teen would be frustrated with.” Board members also commented on the age appropriateness of language used in survey items. They noted that surveys often “treat all minors with the same tone (words like “playing games” or “can’t sit still” and using simple sentences [and] words)…”, and this can make older youth “feel talked down to” in the context of a research study.

We also must consider the priorities and values of youth’s experiences when developing new measures. Without involving youth in developing assessment methods, we will miss key constructs of interest and importance to youth. Board members shared, “You might ask a teen how often they stay up past a certain time, and then conclude that teens are struggling with insomnia or their phones are keeping them awake. But there might be lots of reasons.” Youth perspectives are needed to ensure measures are understandable and relevant to youth and that they capture youth’s full experiences. Conceptualizing youth mental health and the factors that influence the development, course, and outcomes of psychopathology is likely dynamic, just like youth’s lived experiences. Our approaches to developing and validating assessment tools has not historically reflected this dynamic on a large scale.

Having youth with lived experiences provide ongoing feedback can help to determine what youth think or believe the measure or task is assessing, and whether there are more relevant or valid ways to induce or assess constructs of interest that better capture the adolescent experience. It is expected that this will change over time, and that our methods should continually adapt from their feedback as the landscape of youth’s experience shift over time (e.g., identity development, technological shifts in communication and social landscapes).

Problem 4: Adolescents’ perspectives are not represented in our data analytic approaches and interpretation of research results.

A primary concern in making decisions regarding analytic approach without adolescent input is how primary and secondary outcomes are defined. Best practices involve an a priori definition of outcomes in study design. Although this is an important step so that designated primary and secondary outcomes are not influenced by post-hoc statistical significance, these decisions often do not involve input from the very individuals for whom the outcomes are most important. Symptom improvement is often selected as a primary outcome, when individuals themselves may be more interested in enhancing positive emotions, quality of relationships, or other values-aligned outcomes (Chevance et al., 2020). Similarly, some studies rely on clinician-rated improvement as a more “objective” outcome, without addressing discrepancies in client perceptions of improvement in the same domains (e.g., Jureidini, 2004). Without YWLE input on the definitions of primary and secondary outcomes used in our research, we risk continued investment in interventions that do not work in the ways most important to those we seek to help. As clinical scientists we may further miss the mark on future directions and recommendations for the application of both basic and intervention study findings to adolescents

Clinical scientists also aim to design data analytic plans that best represent the “true” nature of that data from their observed data points, with the ultimate goal of reflecting the real-world experiences of individuals in the population. The absence of youth perspectives and input in the aforementioned areas (e.g., research questions, measurement selection) may bias key aspects of analytic approaches. The selection of predictors, moderators, mediators, and indicators of mental health course and outcome, may be incomplete or misrepresent the nature of associations between constructs of interest. Making analytic design decisions without involving adolescent perspectives poses a risk of mischaracterizing the experiences of youth and drawing inconsequential or inaccurate conclusions about adolescent mental health.

Lived experience input can be incorporated into data analytic and interpretation decisions in a number of ways. Adolescents can be consulted to lend expertise about the modern youth experience with regard to combining or subgrouping participants across a range of youth-specific characteristics. They can also provide feedback on outcomes that are most relevant and important for their mental health and day-to-day lives. Adolescents can provide critical feedback on how understandable study results are for a broader audience, and how the study implications and limitations are read by those who are the subject of the research. Thoughtfully prioritizing adolescent feedback when making decisions about how to analyze data and report results has potential to improve applicability of findings and to shape the most fruitful future directions.

Problem 5: Adolescents do not have access to research findings about adolescent mental health.

A fifth key problem is the limited transfer of clinical research knowledge from those who conduct the research to the populations intended to benefit from the science. As stated by a REACH member, “Most of the time, researchers want their findings to influence mass audiences. But if the audiences can’t comprehend the findings, then will it influence them?” Empirical research on youth mental health has limited reach when published in academic journals alone, particularly when they are not free to access and when they contain jargon, hard to read language, or are written for very selective audiences. Another REACH member stated this problem clearly: “If researchers really want their studies to influence people, [research findings] have to be accessible. I get that the system is designed to be inaccessible and we can’t immediately change it, but not everyone can access it. This makes it hard to get the research out there.” Our clinical scientific research is often written for an academic audience rather than the general public and is based largely on the incentive systems in the academe. Best practices in publishing health education materials suggest materials should be at the 6–8th grade reading level (Weiss, 2006), yet health education materials and scientific articles rarely meet this criterion (Rooney et al., 2021; Skierkowski et al., 2019). One REACH member noted, “Any teenagers trying to find research papers in their own time to address their own problems or find solutions might be confused by the jargon used.” Ultimately, YWLE of psychopathology are often not able to access or interpret research about adolescent mental health, even when they were participants in the studies.

When youth cannot access our science, we fail to give them the opportunity to learn about, critique, and discuss the results of this research. Further, broadly disseminating results to reach teens, families, and community members (e.g., teachers, community leaders, policy-makers, clinicians) is necessary for strengthening both trust in the scientific community and the science that is being conducted. It also provides important opportunities to get feedback from the broader community of youth experiencing the mental health concerns we investigate. Ultimately, it is incumbent upon researchers to share our findings in ways that are approachable, accessible, and understandable to a general audience and to youth with psychopathology specifically.

Where we choose to disseminate our work directly impacts who will access it. The predominant mode of scientific dissemination in the psychological sciences is through scientific publication and academic conferences. Indeed, most incentive structures for researchers (e.g., promotion, tenure, grant funding) are built around these modes of scientific dissemination. Although publishing in these journals is necessary to improve science through peer review and for scientific recognition of our work, it is critical to move beyond the scientific or academic audience.

Finding opportunities to partner with and disseminate information to schools, community-serving organizations, and to youth directly (e.g., through social media platforms, email lists for participants in the study, from YAB members) could help to reduce the gap between the science community and the public. This information is likely to be more accessible and engaging if we are creating it for youth rather than just about them, and ideally, with youth as active participants in how we discuss our findings. Science communication via social media is growing on platforms including TikTok, Instagram, YouTube, and Twitter. Sharing accurate findings may be even more important on these platforms to counteract the misinformation on mental health that often is posted. We have an opportunity through these freely available platforms to increase exposure to our clinical science but only if we do so in ways that are digestible and appealing to younger audiences.

Strategies to Promote YWLE Engagement in The Research Process

Strategies to address these problems require direct involvement of youth in all stages of the research process. These youth should represent a range of identities and experiences to best increase the impact of our research. Below, we describe strategies that can help researchers to identify and engage YWLE in clinical science.

How do researchers find adolescents with whom to engage?

Recruitment.

There are a range of common recruitment sources that child and adolescent clinical scientists may use. One effective approach is reaching out directly to adolescents. In forming our REACH board, for example, response to recruitment materials was most effective when we advertised to adolescents through social media rather than when we tried identifying youth through adults. Social media may be a particularly powerful tool to engage adolescents with lived experience who may not be open with their parents/caregivers about their mental health, and researchers may benefit from investing time and resources into building a presence in these evolving digital spaces.

On the other hand, one REACH YAB member noted that researchers need to post “physical flyers so folks do not need the internet to have their voice heard.” Posting study information in spaces where teens are in your community (i.e., beyond hospitals and universities) and developing authentic and mutually beneficial relationships with community organizations that serve diverse adolescents are potential ways to also reach teens outside of social media. Consistent with the importance of involving youth, one REACH board ultimately recommended: “ask[ing] teens where research and youth involvement opportunities should be presented so that they are accessible to other teens. Teens know what methods of communication they use frequently!”

Transparency and Language.

It is critical that researchers are transparent about what adolescent involvement in these efforts would entail. This includes clearly articulating what they will be expected to do and how they will be compensated. In addition, if they are joining a research team as a lived experience expert, researchers should clearly delineate their role as contributors, rather than as a client or patient receiving treatment. Providing these clear expectations is important for YWLE to make informed decisions about if and how they want to be involved.

When developing recruitment materials, researchers should use clear text that is at an appropriate reading level. Accurate information about what participants will do and if/how they will be compensated should be included. There also should be information on how to find out more about the opportunity and who to contact to ask questions. We also should carefully consider the images used in recruitment advertisements. We learned through feedback from the REACH board that images of stereotypical “teenagers” or “depressed teenagers” may not resonate with all youth, especially when images used do not look like them, and may inadvertently feel invalidating of their experiences. It is recommended to ask adolescents for their feedback to ensure study advertisements are appealing, accessible, and represent the actual experiences of the population that is being targeted for research.

Adolescent Autonomy.

Parent or guardian permission is traditionally required for minors to participate in the research process. However, we recommend that researchers consider waiving this requirement for YWLE participation in YPAR. We know from prior research that many YWLE, and particularly YWLE with additional minority identities, do not share their symptoms with parents for myriad reasons. Just as parental permission is a primary barrier to participating in research studies (Cavazos-Rehg et al., 2020; Tigges et al., 2003) and to receiving mental healthcare (Boonstra & Nash, 2000), it is likely also a barrier to YWLE joining an advisory board or serving as a consultant for mental health research teams. Parent consent requirements thus limit the representation of diverse perspectives on our research teams.

Giving adolescents agency to participate without parental consent may be one way to address this barrier and to enhance representation of diverse perspectives on our youth advisory boards and our research teams. This approach can empower youth to participate without risk of parent discovery of identities (e.g., diverse sexuality, gender) or mental health challenges (e.g., nonsuicidal self-injury) that teens may understandably wish to conceal. Further, recognizing that teens have autonomy in decisions about their mental health is important in building trust with teens at the very start of their work with researchers. Recognizing this need, Institutional Review Boards are increasingly waiving the requirement of parent/guardian consent when justified (e.g., Smith et al., 2022). When parent and guardian consent is waived, it is important that researchers use clear and plain language to ensure YWLE understand the parameters of their participation as a lived experience expert (e.g., risks, benefits, compensation, duration) and that they take steps to overcome other barriers to participation that may be amplified without parent/guardian involvement (e.g., travel).

There are times where it may not be feasible to waive parent/guardian consent to participate as a consultant or join an advisory board. In these instances, we recommend that researchers take steps to maximize YWLE confidentiality and autonomy (e.g., consent materials that do not disclose child mental health symptoms).

Considerations for building your research team.

When engaging YWLE, clinical scientists should consider who is on our research teams. It is important for teams to assess whether their own identities, specific knowledge, representation and perspectives, and relationships with the communities they want to study are appropriate for their questions about adolescent mental health. This applies both to the clinical scientists on the research team and when partnering with adolescents as research team members. Ensuring that the clinical scientists leading the work are representative of the teen population or research area you are studying can impact both whether adolescents want to engage as a part of your research team and who may want to participate in your research. REACH YAB members commented on this saying, with “today’s teens, if you are reaching out to these groups– it is important that you are a non-threatening presence. Having someone who is in that demographic (e.g., teen who works in your lab) is really important.” Further, training in youth-adult partnerships and anti-oppressive, anti-racist practices is essential to prevent harm when engaging YWLE in this work.

How do researchers meaningfully engage YWLE?

It is critical that the voices and lived experience expertise of YWLE be considered complementary to, and on level with, that of researchers. Below, we discuss considerations for intentionally and meaningfully engaging YWLE in the research process to address the problems highlighted above. This requires an ongoing relationship with YWLE to get feedback across stages.

Directly involve YWLE on research teams.

It is critical that the voices and lived experience expertise of YWLE be considered complementary to, and on level with, that of researchers, and in some instances, YWLE voices should be not only elevated but also prioritized. Formally establishing opportunities for YWLE to participate as an equal member of research teams is essential. There are a broad range of approaches that clinical scientists can take. This could include establishing a youth advisory board for a specific study or your overall program of research (see Supplemental Figure 1) or hiring adolescents to serve as research assistants on your research team. Alternatively, it may be more feasible to start with one-time or limited engagement opportunities, such as conducting focus groups with YWLE or engaging with YWLE as consultants on an as-needed or less regular basis. These approaches are flexible and adaptable to the needs of a given research project or team.

Solicit direct feedback from YWLE.

Ongoing engagement with YWLE throughout the research process opens up the opportunity to receive critical evaluation and feedback across all research stages. As highlighted in the six key problems we discussed above, earlier involvement of adolescents in the research process allows youth to provide insight into how to define the research questions (e.g., critical questions, priorities, big picture factors adults might miss), primary methods of recruitment (e.g., advertisements, language, location), research methods (e.g., study design and measures), defining study outcomes that are important to them (e.g., symptoms, functional, or other important factors that might shift their engagement or well-being).

For example, asking adolescents to help define study outcomes prior to data collection may improve our understanding of what clinical interventions work, how they work, and for whom they work. For clinical intervention trials, it would be immensely beneficial to hear from adolescents about their anticipated or desired outcomes at the completion of a course of treatment. Although it may be symptom improvement (often used as a primary outcome in RCTs), other outcomes such as improved relationships may take priority for some youth. Another example is to have YWLE review study protocols, including interviews, questionnaires, and tasks included in the research study assessments. During REACH Board meetings, for example, board members reviewed commonly used assessments of adolescent depression and noted places where language felt “outdated” (e.g., “feeling blue” to describe depressed mood in semi-structured interviews), not developmentally appropriate (e.g., not being able to “sit still), and unclear. Creating space in empirical investigations to collect youth-generated language or terminology can improve not only the assessment tools that we use, but the clarity and accuracy of the conclusions that are drawn from empirical inquiries. As said by one of the board members, “teen feedback ensures that these surveys improve. I get that using one survey over a long period helps get important data but finding new ways to ask the same question is vital.”

Use active research studies to collect feedback from adolescent research participants.

A cost- and time-effective approach may be to include questions in study surveys to gather more information about the research process from adolescents who are already participating in studies. For example, the REACH YAB suggested including optional open-ended questions at the end of research measures to allow youth to provide greater context about their answers and ideas for future research questions the researchers could pursue next. These types of opportunities for feedback can help researchers to better align their research questions and methods with adolescents’ own needs and priorities. Asking adolescent participants for feedback on experimental tasks and other study methods may also help to determine what youth think or believe the task or procedure is doing, and whether there are more relevant or valid ways to induce or assess constructs of interest that better capture the adolescent experience. It is expected that this will change over time, and that our methods should adapt as the landscape of youth’s experience shift over time (e.g., identity development, technological shifts in communication and social landscapes).

Act on feedback from YWLE.

When engaging YWLE at any stage in the clinical science process, we must be willing to intentionally and thoughtfully engage with their critical feedback. That is, we need to be prepared to integrate and respond to youth feedback when we solicit it. As in any collaborations, there may be differences of opinion that require thoughtful consideration and discussion. Respecting diversity in opinions and experiences and communicating how we plan to incorporate such input into the research process is a necessary step to build and maintain relationships with the adolescents we involve in our work. Having transparent discussions with the full research team, including YWLE, about how decisions are made and why feedback is or is not integrated into the research will make for more fruitful, trusting collaborative relationships.

Build mutually beneficial relationships with YWLE.

As we build meaningful, collaborative relationships with YWLE in our clinical research, we must also consider their needs and how we can best support their goals. Researchers must be mindful of how our relationships with adolescents can be mutually beneficial. Although compensation for their time is an important way to acknowledge adolescents’ contributions, asking YWLE to use their personal experience with mental health to benefit our research is a cognitively and emotionally taxing task. Given our position as established clinical scientists, we have an opportunity to support the adolescents we work with in their personal, educational, or professional goals, consistent with longstanding CPBR and YPAR principles.

One concrete way to make these relationships mutually beneficial is to make the science they contribute to more accessible, both to the youth actively engaged in our research and to the broader adolescent population. Youth should have an opportunity to learn about the findings from studies they contribute to as collaborators and as participants. This information is likely to be more accessible and engaging if we are creating it for youth rather than just about them, and ideally, with youth as active participants in how we discuss our findings. One strategy aligned with participatory research approaches is to partner with youth directly in the dissemination of research findings and action steps, including brainstorming with youth the targeted audiences, types of products and relevant platforms to share findings. Another strategy is to partner with schools and youth/community-serving organizations to reduce the gap between the science community and the public.

Call to Action

Engaging youth with lived experience in our science has the potential to move the field forward towards a greater understanding of youth mental health and its prevention and treatment. While there has been some movement in recent years towards community engagement in research, child and adolescent psychopathology research has largely failed to take youth perspectives into account. This is a missed opportunity to improve how we conduct and share our research about youth with psychopathology and enhance the potential impact of research findings on youth and communities. We call on the field of clinical psychological science to act.

We first want to acknowledge the ongoing efforts by some in the field to engage youth with lived experience in clinical science. Researchers at the University Wisconsin-Madison led by Dr. Megan Moreno lead an initiative to fund youth advisory boards in the child mental health and technology space (including the REACH Board). Individual teams of scientists are developing community advisory boards or youth advisory boards around the country. As another example from the editorial perspective, the Editor of the journal Psychiatric Services issued a statement in December 2021 that the journal would be prioritizing lived experiences perspectives in peer review and encouraging lived experienced participation in writing manuscripts, and they developed a working group/advisory board to guide them in this undertaking (Jones et al., 2021). Grant agencies have also begun to integrate community and lived experiences perspectives. The Wellcome Trust has issued several calls for funding that require lived experience involvement on the research team, while the NIH National Center for Advancing Translational Sciences funds a consortium of programs at universities around the U.S. to provide Community Engagement Cores delivering services and resources for researchers. These initiatives do not yet represent the norm in the conduct of clinical science, but they can be used as models. With greater collaboration and commitment there is great potential for clinical scientists to access resources and invest in intentional ways to include youth voices in our research practices more broadly.

It is critical for clinical scientists to engage in preparation and readiness for including YWLE in the research process, both at the individual and institutional (or organizational) levels. “Organizational readiness”, from the research team to the institution’s infrastructure and resources, is outlined in Principles of Community Engagement, published by NIH (Publication No. 11-7782, 2011) and publicly available for guidance. It is important for individual scientists and research teams to consider the level of community engagement that best fits their ability to include YWLE and accomplishes the goals of their science (see Figure 1.1, Principles of Community Engagement). Along this continuum teams may consider outreach and consultation with adolescents (examples include youth advisory boards and other strategies named above), or intentional and bidirectional partnerships such as shared leadership (e.g., community based participatory research or youth participatory action research). Making a principle-guided determination of the level of community engagement needed will strongly influence decision-making and evaluations of the resources and infrastructure required to accomplish the goal of incorporating voices of youth with lived experience into clinical science.

At the individual level, identifying and readying your research team for the most appropriate level of youth engagement may require the pursuit of additional knowledge skills in areas such as positive youth development, youth-adult partnerships, and anti-racist practice (Augsberger et al., 2023). Adjacent fields of social science (e.g., social work, counseling psychology) have rich histories of responsibly and effectively building meaningful connections with communities and individuals with lived experience. Many of the practices these fields regularly implement would benefit clinical science. One example is highlighted in a recent call for the practice of reflexivity, defined as “the process of engaging in self-reflection about who we are as researchers, how our subjectivities and biases guide and information the research process, and how our worldview is shaped by the research we do and vice versa” in quantitative social sciences (Jamieson et al., 2022). This work highlights the importance of self and team reflection in engaging youth, particularly from underrepresented populations, in the research process. The practice of reflexivity encourages scientists to ask themselves a series of questions in assessing motives, including “why are we best placed–or not–to research and involve this population group, and answer these questions?” Responsible conduct of research may involve individual and team evaluation of whether they are appropriately equipped or positioned to engage youth populations with lived experience. Evaluation of readiness may include a team’s representativeness across different identities and backgrounds, the skill sets of the members, team values, and experiences with target population and communities. Without such self-reflection and evaluation, despite even the best intentions, we run the serious risk of enacting more harm than good in our efforts to engage with adolescents with lived experience.

At the institutional level, readiness to meaningfully engage with youth in the community requires evaluation of infrastructure, values, and incentives, among other critical points highlighted in the NIH Principles of Community Engagement (Publication No. 11-7782, 2011). Increasing representation in clinical science research requires significant investment by not only individual scientists and research teams, but also their institutions, to establish and sustain relationships that benefit and foster trust with community organizations and members. Often, however, the long-term work that is necessary for more inclusive science is not incentivized by academic institutions. Time spent in community engagement may directly contrast with the activities that scientists are focused on for promotion, tenure, and research funding. It is not uncommon for it to take a decade’s worth of investment to build meaningful relationships with communities with lived experience, and the willingness to engage in activities that may not benefit individual scientific inquiries in the short term requires a re-prioritization of institutional investments. Community partnerships and engaging with lived experience perspectives must be valued when evaluating an individual or team’s contributions to clinical science. From an infrastructure perspective, institutions with research-focused services designed to support community relationships and engagement can make a significant impact. As one example, 62 academic institutions around the U.S. have an NIH-funded Clinical and Translational Science Institute. CTSIs include a Community Engagement Core with services designed to educate scientists and provide necessary resources (e.g., consultation, pilot funding, trainings) for activities across the community engagement continuum. Identifying existing resources or partnering with colleagues to advocate for such services in institutions without these infrastructures is an investment that can shape clinical science in the next era.

At the funding level, agencies must also consider adolescents’ priorities when determining their priorities. Funding is necessary to support research on youth mental health. However, there are currently no broad reaching expectations that funding agencies consult with individuals with lived experience to determine funding priorities, or that clinical scientists who receive funding incorporate lived experience perspectives. Funding agencies frequently decide, without the input of YWLE, (1) which clinical scientists are awarded funds to conduct the research and (2) what specific research studies are supported. Stated by a REACH YAB member, without listening to and learning from YWLE, “adults may simply be missing the mark, which wastes valuable money and time.” Effectively and ethically engaging with young people requires explicitly designating financial resources to do so. Without a requirement that funding agencies and clinical scientists themselves solicit youth perspectives, it will always be left to the discretion and priorities of the investigative team. A change in priorities and incentives are necessary to facilitate the perspectives of YWLE in the funding agencies’ agendas and in the work of clinical research teams supported by those funds. Notably, there is a precedent for funding agencies to require lived experience engagement in funded projects (e.g., the Wellcome Trust, NIMH ​​RFA-MH-23-260). Further, at the National Institute for Health and Care Research in the United Kingdom, individuals can be involved by signing up to “join a funding agency” to use their own experience to enhance the quality of research conducted and learn more about the research process. These top-down approaches by funding agencies are needed to ensure a more systemic and equitable research process. Implementing this systemic change may both (1) shape research on youth mental health to better align with the needs and goals of youth, and (2) signify the importance and value of this work to researchers and their institutions.

We challenge the field to view adolescents as partners in our work, rather than simply subjects to be studied. In doing so, our clinical psychological science has greater potential for real, lasting impact. We also recognize that it may not be feasible to incorporate all of these suggestions or tackle each of these problems immediately. And certainly, the aforementioned potential solutions are not exhaustive, nor are they without challenges. There is much to be said about the ways in which incentive structures in clinical science may produce barriers to meaningful youth engagement. However, more inclusive, and relevant science necessitates creative and collaborative methods for overcoming these barriers. In this vein, working together as a field to develop resources to support the inclusion of youth with lived experience will benefit the greater clinical science community. Connecting with other clinical scientists to form joint youth advisory boards or to problem solve ways to overcome institutional and systemic barriers can help us all be more successful in moving towards prioritizing adolescent perspectives. In short, it is imperative that we start somewhere. Taking the first step to implement any one of the above suggestions is a welcomed start towards more equitable and impactful clinical science.

Figure 1.

Overview of key problem areas in clinical science and strategies to engage youth with lived experience in clinical science.