May is Mental Health Awareness Month, bringing attention to mental health and how essential it is to overall health. This is also a time to recognize the people who live with mental health conditions in our communities, including serious mental illnesses like schizophrenia and bipolar disorders. People living with these conditions can be integral parts of research and development teams, as they bring “lived experience” to the table. As the Office of the Assistant Secretary for Planning and Evaluation at the Department of Health and Human Services described it, “lived experience refers to ‘representation and understanding of an individual’s human experiences, choices, and options and how those factors influence one’s perception of knowledge’ based on one’s own life.” People with lived experience have knowledge gained through their direct, first-hand involvement in everyday events, rather than what is assumed or learned from other people, research, or media representations. For example, someone who is diagnosed with schizophrenia has lived experience with serious mental illness and what it’s like to participate in school, work, or community living with such conditions. When people with lived experience participate in research and development, benefits include building trust and collaboration with the community and improving equitable outcomes.
Many NIDILRR-funded research and development projects bring people with lived experience onto their teams, from individual researchers to consumer advisory boards that provide input throughout the grant. Here are a few that engage people with lived experience in mental health and serious mental illness:
The Learning and Working During the Transition to Adulthood Research and Training Center (Transitions ACR) includes people with lived experience throughout its activities. These include advisory boards of young people and families and blog articles, podcasts, infocomics, and other publications and products created by and for young people with mental health conditions. Transitions ACR describes Youth Voice as “the empowerment and involvement of young people in all levels of services. For example: as individual consumers of services, as advisors to systems, or as members of a research team.” They describe four levels of involvement in this center’s research: youth informed, youth involved, youth partnered, and youth led.
ConnectionsRx: A Distance-Based, Community Participation Intervention for Young Adults with Serious Mental Illness (SMI) tests a technology-based, distance intervention to increase community participation of young adults with serious mental illnesses. The project gathered input from young adults with lived experience in developing the intervention and training manual.
Peer Navigators for the Health and Wellness of People with Psychiatric Disabilities tests the impact of a peer navigator program (PNP) on engagement of people with psychiatric disabilities in the existing service system to address their health and wellness goals. Peer navigators are people of similar ethnic heritage with lived experience of recovery who can assist in successfully engaging with the health services system. This project is led by a community-based participatory research team of people with lived experience.
Reclaiming Employment: Self-Employment Resources for Mental Health Service Users develops and evaluates a public-facing online platform, Reclaiming Employment™, that provides support for individuals with psychiatric disabilities to pursue self-employment and entrepreneurship. The final product provides three key offerings accessibility via a single sign-on including a library of resources through curated external links; courses to provide asynchronous, self-paced learning; and moderated social support platform/network by Live & Learn, Inc., a user-led research and consulting firm that partners with consultants with lived experience of both disability and self-employment as well as research, curriculum design and training, and new media organizations to support the project objectives.
Yale Post-Doctoral Research Training Program to Advance Competitive Integrated Employment for People with Psychiatric Disabilities provides postdoctoral training in recovery-oriented research to advance competitive integrated employment among persons with psychiatric disabilities. The program provides training and mentoring to researchers from a variety of fields and includes those with lived experience of psychiatric and other disabilities. These are just a few examples of NIDILRR-funded projects that incorporate the lived experience of people with disabilities in their research and development. You can explore more descriptions of current and completed projects in the NIDILRR Program Database.