In the past year, numerous reports and publications have described a youth and young adult mental health "crisis" (Population Research Bureau, 2022; NAMI, 2022; Surgeon General, 2021; National Council on Disability, 2021), tied both to accelerating conditions preceding the COVID-19 pandemic, as well as the effects of the pandemic itself. Comparing pre-COVID data from 2019 to post-COVID 2020, for example, the Centers for Disease Control identified marked increases in suicidal ideation, depression, and anxiety, with particularly high spikes among young adults aged 18-25 (CDC, 2021). This follows over a decade of increased distress and demand for mental health services among college students.
Despite a growing number of college suicide prevention and student well-being initiatives, research and interventions focused on campus crisis response, hospitalization, and the reintegration and inclusion of students with psychiatric disabilities are underdeveloped. To address this gap, this project is designed to center college students with psychiatric disabilities in the process of identifying priority outcomes and interventions for research, including comparative effectiveness research.
The project team is unaware of any research initiatives focused on actively involving students with the full range of psychiatric disabilities in campus mental health patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER), nor that tracks to patient priorities reflective of those with longer-term psychiatric disabilities.
This 12-month project will take place from January 2023 to December 2023; the project is co-led by Kelly Davis (Mental Health America), Dr. Nev Jones (University of Pittsburgh), and Delisha Thompson (Bazelon Center for Mental Health Law).
The project leads will work with selected workgroup members, who are students with lived experience, and researchers to discuss and identify priority areas for research and change in (1) mental health crisis response, (2) (re)-integration, and (3) accommodations. Project leads and workgroup members will then share findings at a large group convening on September 6, 2023, with guests including additional students with lived experience, administrators, clinicians, researchers, and other stakeholders. Project leads will then integrate feedback and create resources, including issue briefs, that will be promoted to the general public and relevant stakeholders.
The project will help amplify the voices and perspectives of these groups and redirect national research and policy conversations to aspects of campus mental health response that include police involvement in crisis response, involuntary hospitalization, mandated leaves of absence, integration and inclusion following a leave or break, and disability accommodations
In addition to recommendations and guidance, the project team will compile a (voluntary) list of all participants, their areas of expertise and experience, and contact information for researchers and others interested in advancing the leadership of workgroup members and project findings.
The project is one component of a push for greater lived experience/patient involvement in mental health research and policy that, in combination with external pressures, will help push US funders and researchers toward embracing quality involvement practices.
Research and resources originally formed through, inspired by, or informed by the proposed convening will receive funding during this time period and commence. Additionally, the project team hopes that as the field continues to embrace expanded and more meaningful patient-stakeholder involvement, funders may increasingly look to patient-led priorities such as those developed in this project as essential items for consideration as project teams apply for funding and justify prioritized research approaches and focus topics, including the proposed recommendations and guidance.
Read a full description of the project and plan here.