Mental health research is a specialized field dominated by academic medical centers. There are continued debates about how to allocate limited research dollars. But an important voice has been missing from those conversations: the voice of young people. Given the early onset of mental health conditions and the poor outcomes experienced by American youth, this voice is essential to fair and equitable allocation of resources.
Data indicates that three-quarters of mental health conditions onset before age 24. Unlike other chronic conditions, such as cancer and heart disease, which are health concerns of an older population, mental health conditions disproportionately affect young people. According to the 2022 National Survey of Drug Use and Health (NSDUH), nearly half of all young adults ages 18-25 years had a mental illness, substance use or both. This was a higher percentage than other categories of adults.
In addition, young people struggle to get access to services that they want and need. Systems rarely measure young people’s experiences with services, and they are often unable to access effective treatments. Mental health disparities in access to care and discriminatory diagnoses also impact young people of color. As a result, it is very important for the National Institute of Mental Health (NIMH) to prioritize areas of interest to young people, to research and understand disparities, and to ensure the inclusion of diverse young people in efforts to continuously advise the agency on priorities.
Intergenerational differences became clear as we worked on this blog together. It originally had more about the differences in young people’s brain structure and the implications for research, until we realized that this was not something we heard young people prioritize. The discussion of social media reflects the importance to younger generations of connection and activism through platforms as third places in their lives, alongside a clear-eyed recognition of the harms that often dominate parents’ concerns. And instead of looking at traditional treatments, such as therapy and medication for youth, we examined music and peer support because those are the interventions youth have said that they want and find most useful.
Here are specific policy recommendations the NIMH can implement to ensure that young people have a seat at the table and their unique perspectives are reflected in mental health research:
Fund research in priority areas for youth and address disparities
Young people should provide continuous input into priority areas. There are some topics, however, that research and data indicate are clearly of interest and importance to young people and young people have taken leadership roles in addressing these areas. A few of these are highlighted below:
Harmful and positive effects of social media and effective methods to promote healthy social media use and mitigate harms
For over a decade, the rise of social media has sparked debates over its potential to harm the younger generation. Parents, guardians, educators, and researchers often emphasize the negative impacts and possible long-term effects on youth. Although there are clearly harms, this one-sided narrative frequently overlooks the fact that, for many young people, social media has provided much-needed community, relief, and connectivity crucial for their development.
Social media plays a significant role in the lives of many young people, serving as their "third place." The concept of the third place, introduced by sociologist Ray Oldenburg, describes an informal social setting that is neither home nor work/school, where people can gather and socialize. According to this piece in The Atlantic, many traditional social spaces are "either too expensive for the average American or apparently designed to disincentivize lingering," leading many young people to seek connection and community on social media. Ten years ago, a group of friends meeting at a coffee shop to share their latest life updates may now look like a Reddit thread discussing the top “Love Island” contestant this season. While socialization might look different for the younger generation, it is valuable, and social media is pivotal in securing these connections.
At the same time, young people recognize that social media companies are maximizing profit to their detriment. Hence, it is crucial to research and implement safety measures to keep young users safe online. Often, when the problems with social media are highlighted, the blame is placed on the users. However, it is equally important to recognize that social media apps are often intentionally designed to induce or exacerbate negative user habits. Algorithms and their harmful effects on users present a significant issue. According to Yale Medicine, youth can easily access dangerous and harmful content due to how the algorithm operates. For instance, if someone searches for information on an eating disorder or mental illness, the algorithm is likely to show them related content, potentially worsening any underlying issues.
In a recent social media summit led by young people, many attendees identified social media literacy in schools as a priority to help reduce the negative impact of these apps. Advocating for lessons that educate young people on safe media use makes it more likely for them to have positive online experiences. Social media literacy can be implemented through a concept known as “peer-to-peer education.” Researchers describe peer-to-peer education as the “sharing of information and experiences among individuals with something in common.” Upperclassmen, trained in media literacy, could facilitate conversations on safe media use, promoting informal mentorship and connection in schools. New tools are emerging to use technology to control technology. Effective interventions must be identified and knowledge of them increased. Further research into ways to implement successful media literacy tools—like identifying spam or unhealthy messages and recognizing AI-generated content—is necessary to prepare younger generations to navigate media safely.
Another area that young people identified is the effect that online connections have on relationships in real life(IRL) and the importance of research on how to best encourage that social connection. A few years ago, as activism surged, millions of people—many of whom were adolescents and young adults—marched the streets to lead Black Lives Matter (BLM) protests and other social movements largely due to connections made on social media. Collective movements like these would not have been as impactful without the online networks that brought people together for in-person actions. Another example of social media's influence on IRL relationships can be seen in the ways pop stars and their fan groups connect. In 2022, millions of members of the Beyhive around the world collectively wore metallic and gold colors to Beyoncé’s world tour performances. Swifties dressed in different “Era” costumes representing Taylor Swift’s various albums, and Gracie Abrams’ fans wore bows in their hair to align with the singer's coquette aesthetic during her concerts. These actions strengthened bonds during in-person meetups and fostered a sense of community, all made possible by social media’s power to connect people globally.
With proper resources, tools, and accountability, social media apps can truly flourish as an accepting and inclusive third space for the younger generation. It is vital that research identify effective ways to advance the health and well-being of adolescents on these platforms.
Peer support services, including services in schools
Peer support is increasingly recognized as a crucial element in the mental health care ecosystem, especially for young people. As defined by the Substance Abuse and Mental Health Services Administration (SAMHSA), peer support encompasses “a range of activities and interactions between people who share similar experiences of being diagnosed with mental health conditions, substance use disorders, or both.” While it does not replace the critical roles of therapists, physicians, and other mental health professionals, peer support offers essential benefits due to its accessibility and affordability. These services are particularly valuable for young people in addressing a wide range of topics, including identity exploration, mental health challenges, and the transition into adulthood
Peer support services are often accessible through schools and community programs. For instance, the Support Network trains high school and college students to facilitate peer support groups, teach self-help skills, and raise awareness about mental health among their peers. Such programs are instrumental in providing mental health support to young people, particularly those from underrepresented groups, who might otherwise lack access to these services. Peer support can also look like a campus support group for individuals dealing with body image issues or clubs addressing the impacts of toxic masculinity on mental health that is led by a peer support specialist.
Certified youth peer support specialists also provide support to young people, often to address mental health and well-being. This can take place at a center focused on young people or as part of a mobile crisis team or other mental health service.
Research by organizations like MHA and Harvard Medical School highlight that peer support has positive impacts on the lives of young people, even leading to positive consequences like increased quality of life and overall health improvements, but more research is needed to improve the training, effectiveness, and scale of these programs. Overall, peer support services are essential in creating supportive environments for young people to manage their mental health and well-being.
Music
Crisis Textline analyzed its conversations with texters, the majority of which are young people, and found that the No. 1 coping strategy for those experiencing distress overall was music. Music also was the No. 1 coping strategy for young people experiencing suicidal ideation.
A recent meta-analysis of the impact of music on mental health conditions found a lack of consistent documentation of key information and recommended further research in the field. The study noted that the vast majority of the studies showed that music had a positive effect and that research had established that a music-based approach to mental healthcare can increase the likelihood of accessing care. This is particularly important given the low rates of young people accessing care. In addition, a blog published by the American Psychiatric Association noted: “By addressing topics such as racial inequality, gender discrimination, and LGBTQ+ rights, music becomes a powerful medium for advocating for social justice and promoting inclusivity.” Music has the potential to address healing from racial discrimination which has been shown to impact mental health.
Given young people’s current use of music to cope with mental health issues, it would be helpful for NIMH to further research what is most effective to maximize this intervention that young people already seek and to help standardize information collected and report on demographics to ensure equitable access to music-based care. NIMH can then work with other agencies, such as Centers for Medicare & Medicaid Services (CMS) and SAMHSA, to ensure payment and knowledge of music-based strategies by healthcare providers, families and young people.
Promote Youth leadership at NIMH
Given that half of all mental health conditions emerge before the mid-teens and three-quarters before the mid-20s, it is imperative that the NIMH develops multiple avenues to incorporate the voices of young people into their research. Prioritizing youth voices in mental health research ensures that the needs and experiences of the younger generation are represented, leading to solutions that are more likely to be effective and relevant.
Several research agencies and organizations have successfully integrated youth voices into their work, providing a blueprint for how NIMH could do the same. For example, the SAMHSA-funded Technical Assistance Center on Social Media, located at the American Academy of Pediatrics, invited a high school student and a college-age young person to be members of its Technical Expert Panel. The Center also created a Youth Advisory Panel (YAP), allowing these young people to participate more broadly and influence the direction of their work. This model, which includes convenings with SAMHSA officials attended by youth panel members and periodic surveys of young people, demonstrates a multi-faceted approach to incorporating youth input.
NIMH could adopt similar strategies, using a combination of representation, focus groups, and surveys to gather the widest possible input from young people. Additionally, the Patient-Centered Outcomes Research Institute (PCORI) provides another example. PCORI requires researchers applying for grants to partner with organizations and individuals and engage with them early to ensure that the research reflects the priorities of the people being studied. NIMH could strengthen its own requirements for engagement, particularly with young people, in areas that primarily concern them.
Incorporating more youth representation in leadership and research enables young people to take an active role in their mental health and contributes to the development of solutions that support their peers. It is vital that national agencies like NIMH prioritize the inclusion of youth voices to ensure that their research is both relevant and impactful.
Conclusion
Integrating the voices of young people into mental health research is not only a matter of equity but also a necessity for developing effective and relevant solutions. The early onset of mental health conditions among youth, coupled with the unique challenges they face in accessing care, underscores the need for their input in shaping research priorities. By prioritizing youth voices, NIMH and other research institutions can better address the disparities in mental health care and ensure that the needs of young people are at the forefront of their efforts. This will ultimately lead to more impactful outcomes that resonate with the lived experiences of young people, fostering a future where their mental health and well-being are more comprehensively supported.
