Research has consistently demonstrated that BIPOC (Black, Indigenous, and People of Color) communities experience disproportionately low access and utilization of mental health services in the United States. The Substance Abuse and Mental Health Services Administration (SAMHSA) recently found only one in three Black adults with a mental illness receives treatment (SAMHSA, 2022) despite the fact they’re more likely than White adults to report persistent symptoms of emotional distress (CDC, 2021). Recent data also shows that 35.1% of Latinx adults with mental illness receive treatment each year compared to the United States average of 46.2% (SAMHSA, 2022). Asian Americans and Pacific Islanders (AAPI) are the least likely of any U.S. group to receive mental health treatment; in 2020, only 20.1% of AAPI adults with a mental illness accessed treatment (SAMHSA, 2022). Social and structural factors, such as systemic racism, limited availability of culturally appropriate mental health care, and stigma, have contributed to these disparities in service utilization for BIPOC individuals. Thus, our project aimed to challenge mental illness stigma in BIPOC communities in the NYC area by using a community-based participatory approach to develop culturally relevant tools. We chose a participatory approach because we believed it would help ensure that the tools felt applicable to the communities we created them with and for. In addition, participatory approaches differ from traditional approaches that mental health intervention design and research typically use, in which community members have very little agency and opportunity to give input and make decisions for themselves. Given that BIPOC individuals and communities have historically and currently experience marginalization, which contributes to stigma, sharing power and centering community voices felt essential.
We began our project by initiating partnerships with three New York City-based mental health organizations, Brooklyn Community Services (BCS) in East Brooklyn, Services for the Underserved (S: U.S.) in East Harlem, and Montefiore Medical Center’s Bronx Health Collective (BHC) in the South Bronx. We chose these organizations based on their predominately serving BIPOC communities and because they were located in different boroughs, which we believed would make the project relevant to a wide segment of New Yorkers. In addition, we chose organizations based on one of us having previously established a relationship with them, as we recognized that trust would be an essential component to successful partnerships. Establishing the partnerships involved discussing the projects’ purpose, goals, and timeline with the organizations’ leadership and other stakeholders.
With the support of each organization’s leadership, we held open community discussions at each location. Two meetings happened in person at the organizations, and one was held via Zoom. During these meetings, we asked community members what they thought was important to include in anti-stigma toolkits developed for their communities. Using our grant funding, we could compensate all community members who participated as partners in this project. The community meetings were a key part of our project’s design, given that our goal was to use a participatory approach in which the people and communities our toolkit and website were meant to benefit had active involvement in the project from start to finish. This was important to us from a collaboration and inclusivity standpoint, but also because we know that historically, especially concerning mental health and marginalized communities, policymakers, researchers, and clinicians often take from these communities and do not give back. This exploitation can lead to further mistrust, stigma, and reluctance to partner with researchers and clinicians in the future. Mental illness stigma, especially, is an area where it is crucial to involve lived experience to avoid perpetuating these power imbalances and exacerbating the problem.
After these meetings, we compiled and analyzed the notes and used the common themes to guide the toolkit and website development. For example, following several community members’ advisement that the website and toolkit include information about inpatient and outpatient treatment rights, we included information on how patients can learn about their rights. Similarly, several members suggested we include information about non-clinical ways to address mental health, such as art, and in response, we compiled a list of relevant resources. Most of what the community members shared related to self and public stigma, so these became our primary focus. This was in line with our goal of sharing information about mental health stigma and challenging misinformation and misconceptions. Much of the website and toolkit are devoted to sharing foundational information about what mental health is and why it’s important, why stigma happens, why it happens in BIPOC communities, and how we can fight stigma. Thus, the website and toolkit have the potential to help those who have some familiarity with mental health, mental health stigma, and want to care for their mental health, as well as those who have less knowledge about mental health. To highlight the community-based participatory nature of the project, we named the toolkit and website WeSpeakNYC. When the content was complete, we translated it into Spanish to make it accessible to individuals who prefer materials in Spanish. We next hired a website developer and graphic designer to format the content. Our original plan had been to work with individuals who have lived experience with mental illness. To find designers, we recruited directly from the organizations we’d partnered with and also contacted NAMI (National Alliance on Mental Illness) New York and colleagues who work to address mental illness. To move the project forward within the agreed-upon timeline, we ultimately hired designers without lived experience.
Once the toolkit and website creation neared completion, we met with each of our community partners to plan community showcases. These showcases were intended to officially distribute the tools and celebrate and honor our community partners’ work. In addition, the showcases were an opportunity to hear stories from community members with lived experience. Sharing and hearing these stories was another way to center community voice and a powerful means of challenging stigma. Of note, the website is still up and running as of this article’s writing, and anyone may access it at www.wespeaknyc.org.
With the project completed, we have reflected on our work, particularly what worked well and what could have been done differently. We hope that other agencies interested in doing anti-stigma work, particularly using a collaborative approach, might consider our reflections. When partnering with community organizations, it’s important to be mindful of their constraints because they often have limited time and other resources to devote to new initiatives. We recommend ongoing open and honest discussions about who can contribute what and being open to revising plans as needed. This may be particularly true regarding timelines, collaborating to set realistic timelines is critical, and for many tasks, it’s helpful to allot more time for completion than you might initially think is necessary. While we worked closely with our community partners once we began the projects, we developed the initial proposal independently. This was due to timing and other logistical constraints, but we recognize that developing the proposal would have been ideal. Co-authoring the proposal and collaboratively making decisions about the project’s direction can lead to outcomes that feel more relevant to the community, communicates clearly to community partners that their input is indeed valued, and can help to increase buy-in and commitment.
Dr. Collins is the Director of Counseling and Psychological Services at St. Mary’s College of California. She provides direction for clinical services for the student population, outreach to raise awareness about and address mental health, consultation, and training for the wider campus community. Before relocating to her home state of California and while the project was ongoing, she worked at Montefiore Medical Center in the Bronx, NY, where she was a faculty member in the Department of Family and Social Medicine. There, she provided family medicine residents with education on addressing the psychosocial components of health.
Dr. Gonzales is a faculty member at Columbia University Medical Center’s Psychiatry Department in NYC. She conducts research and training through the Division of Behavioral Health Services and Policy Research. She provides clinical services and training at the Lieber Recovery Clinic to individuals with serious mental illnesses. Her research focus is on stigma in BIPOC communities and social determinants of mental health. Across her roles, the broader mission is to improve mental health services for individuals with SMI via a focus on systemic correlates of mental health and recovery-oriented care.
We express our ongoing gratitude to our community partners, Brooklyn Community Services, Services for the Underserved, and the Bronx Health Leaders of Montefiore Medical Center’s Bronx Health Collective. Your investment of time, energy, and wisdom made a difference in challenging mental illness stigma in NYC’s BIPOC communities.
This project was funded by the New York State Office of Mental Health and the New York State Tax Check-off Funds for Mental Health Stigma Reduction.
References
CDC, 2021. Health United States, 2019. Table 46. https://www.cdc.gov/nchs/data/hus/hus17.pdf
SAMHSA, 2022. Results from the 2019 National Survey on Drug Use and Health: Mental Health Detailed Tables. Table 8.39B https://www.samhsa.gov/data/report/2019-nsduh-detailed-tables
