It’s been a troubling year for millions of Americans, marked by public reckonings over inequities in justice, health care, and most certainly mental health care. None of these inequities are new. Estimates suggest that only 22% of Black Americans — fewer than one in four — who need mental health care actually receive treatment. In addition to financial and insurance barriers to mental health treatment, a long history of discrimination in medicine makes it difficult for some people of color to form trusting relationships with medical providers. And that’s one reason why peer support has been gaining traction to help address unmet needs.
What is peer support for mental health?
Peer support is a relationship based on mutuality — that is, people with similar experiences listening, sharing, and encouraging one another. In the US, peer support training, certification requirements, and availability vary by state. In Massachusetts, for example, mental health peer support groups are facilitated by certified peer specialists (CPS). Once trained and certified by the Massachusetts Department of Mental Health (DMH) through Kiva Centers, CPSs facilitate classes and support groups at Recovery Learning Communities throughout the state. They also work in hospitals, day treatment programs, emergency services, and residential services operated by DMH.
The National Alliance on Mental Illness (NAMI) has widely available Peer-to-Peer and Connection Recovery Support Groups programs. Local chapters of the Depression and Bipolar Support Alliance (DBSA) host peer and parent support groups for families and people living with these conditions. The National Empowerment Center has a directory of peer respite sites offering short-term, overnight crisis support in several states. New and expanded roles for peer support include forensic peer specialists and peer bridgers, who assist people living with mental illness who are transitioning to the community from state hospitals or incarceration.
Studies suggest peer support in traditional mental health settings improves engagement and well-being and reduces mental health hospitalizations. Yet, existing peer support does not address aspects of shared identity like race and ethnicity, or experiences of discrimination in treatment settings. Affinity peer support groups created around race and culture do.
Designing peer support that addresses the impact of race and ethnicity on mental health
In 2005 I created Black Voices: Pathways 4 Recovery (BV) at The Transformation Center in Roxbury, MA, for people of the African diaspora seeking safe spaces to talk about what it’s like living Black in America. It’s enormously valuable to be in the process of recovery with people who face that same daily reality. Together, we’re fighting to stay safe and well despite the fear of turning on the news or stepping outside our homes where we may face racism — directed at us, or someone who looks like us — at any time.
How do affinity groups support recovery and healing? Black Voices members say it’s important to have a group where they can talk about their challenges and frustrations coping with family matters or racism, while dealing with the stress of a mental health diagnosis like depression or schizophrenia, trauma, or addiction. There is so much healing we all need to do as a result of over four centuries of living within the context of the white racial frame. When it seemed like every other week brought a new murder of another unarmed, innocent Black person, all of us were out of sorts: depressed, angry, terrified to be out in public. One person who had seen a new psychiatrist during this time was afraid to mention how they were really feeling for fear of being viewed as “too symptomatic.” Having a place where you can truly be understood — among those who “get you,” your culture, and your needs — is priceless.
Working toward trust and a voice in research
During the past six years, Black Voices members have worked with researchers from the Health Equity Research Lab at Cambridge Health Alliance/Harvard Medical School, and researchers at Johns Hopkins Bloomberg School of Public Health and Albert Einstein College of Medicine. At first, members were skeptical of the researchers. People had a lot of questions, concerns, and pent-up grievances, and they wanted some airtime!
A wonderful co-learning experience gradually unfolded between BV members and the researchers, but mutual trust and respect had to be established first. We had to learn about research culture. Researchers had to learn our “person-first” language, leaving out the clinical terms of diagnosis that cause many people living with mental health issues to feel objectified — like a label rather than a human being. The more the relationship developed, the more we all felt compelled to share ideas for future work and outreach. BV members could see concrete evidence of steps taken. We could feel, heart-to-heart, and hear directly from the research team what this work means to them, and how our experiences contributed meaningfully to mental health care research. Over time, people felt more hopeful, empowered, and excited to collaborate.
Today, BV members welcome research participation, but only after having an opportunity to meet the research team, ask their 1,001 questions, and feel assured that they are not being viewed as “poor charity cases needing rescuing by a great white savior.” We look for respect, transparency, and sincerity. We want evidence that the research team is doing their own homework by continually addressing their own privileges and assumptions while being humble enough to acknowledge that their worldview is limited and biased. There is always more to understand.
Moving forward to make healing connections
In pre-pandemic days, a simple community conversation about mental health in the Black community drew well over 100 people. It was standing room only despite pouring rain: a room filled with young people, elders, caregivers, and providers. There were couples and singles with babies, people “out” about their mental health struggles and others who were not. Many voiced their questions or concerns.
Since that time we’ve moved our forums online, or shifted to venues that can accommodate everyone who wishes to join us. Over and over, we’ve found people want to learn, grow, and heal with one another. They want to be engaged in a mutual give-and-take without judgement or hierarchy from which to fear further trauma. And they seek a process where their opinions, voices, and experiences are not just taken into account, but are centered, valued, and respected. Let’s find a way to deliver that.
From time to time, the Harvard Health Blog invites guest authors who can shed light on different aspects of health, well-being, and the world in which we’re living. Along with Valeria Chambers, EdM, CAS, CPS, we’d like to acknowledge Ana M. Progovac, PhD, a senior scientist at the Health Equity Research Lab at Cambridge Health Alliance, who worked with Ms. Chambers on research and historical background for this post.