Hearing Youth Consumers of Mental Health through Engaged Research with Stakeholders

Background: Young adults have the highest past-year prevalence of mental illness (NIMH, 2017). In the St. Louis area, mental health emergency department visits and hospitalizations for youth and young adults have significantly increased, particularly in minority communities (STLDPH, 2019). Despite these increases, over 60 percent of young adults with a mental illness do not receive treatment (NIMH, 2017). Lack of necessary treatment has dire effects. In 2017, suicide was the second leading cause of death in individuals aged 10-34 (CDC, 2017). The factors that underlie the increase in mental health needs among young adults are unknown, and there is a lack of research to support effective solutions to improve optimal access and engagement in mental health services for young adults. Currently, no mechanism exists to facilitate partnerships between youth and young adults (YYA) and stakeholders to improve YYA mental health services.

Proposed Solution to the Problem: This project aims to build capacity for engaging YYA in community-based research design within the mental health system to prioritize research that is relevant to YYA and stakeholders.


Objectives: The primary objective of this Engagement Award is YYA involvement in developing YYA mental health PCOR/CER priorities. Other objectives include:

• Identify key priority areas of research that are consistent with YYA and stakeholder perspectives on community mental health PCOR/CER
• Create mental health PCOR/CER advisory groups of YYA to guide implementation of strategic research plans for each priority area
• Build and sustain partnerships between advisory groups and stakeholder entities

Activities: The project team will identify YYA with lived mental health experience, then conduct an online survey to identify YYA-focused mental health PCOR/CER priorities. Survey data will inform theme selection for PCOR directions. Then, the team will convene forums of YYA and stakeholders to create PCOR/CER goals based on the developed themes. Forums will orient youth to the current state of research and initiate planning groups to develop priorities. Groups will combine results to form a PCOR strategic plan. Following the forums, the team will engage YYA and stakeholders in advisory groups charged with planning future annual forums, assisting in implementing PCOR/CER plans, and providing input to stakeholders.

Projected Outcomes and Outputs: Groups will combine results to form a PCOR strategic plan. The strategic plan will outline and prioritize PCOR/CER goals for the future. Following the forums, the team will engage YYA and stakeholders in advisory groups charged with planning future annual forums, assisting in implementing PCOR/CER plans, and providing input to stakeholders.

Patient and Stakeholder Engagement Plan: Patients—YYA with lived experience in mental health—will be engaged through completing the online survey and participating in forums and advisory groups. Stakeholders—any entities involved in mental health care in the St. Louis region—will serve in several roles in the project:

• Presenting challenges and barriers related to topic areas in the forums
• Facilitating youth brainstorming sessions on their perspectives and desired research directions to address them
• Helping the YYA on advisory councils brainstorm research directions and projects to present to their organizations

Project Collaborators: Collaborators in this project include the Missouri Department of Mental Health, Places for People, the University of Missouri-St. Louis Counseling and Social Advocacy Center, Missouri Parents Act (MPACT), Behavioral Health Network of St. Louis, The SPOT, the Center for Health Services Research at Rutgers University, and the Franklin County Children and Families Community Resource Board, along with youth and young adults participating as community partners.