It has been a troubling year for millions of Americans, marked by public accounts of inequalities in justice, health care and most certainly mental health care. None of these inequalities are new. Estimates suggest only 22% of black Americans – less than one in four – 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 build trusting relationships with medical providers. And that’s one of the reasons peer support has gained traction to help address unmet need.
What is peer support for mental health?
Peer support is a relationship based on mutuality, where people with similar experiences listen to, share and encourage each other. In the United States, peer support training, certification requirements, and availability vary from state to 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 Nice Centers, CPS run courses and support groups in Recovery learning communities statewide. They also work in hospitals, day treatment programs, emergency departments and residential services managed by DMH.
The National Alliance for the Mentally Ill (NAMI) has largely Equals and Connection Recovery Support Groups programs. Local chapters of Depression and the Bipolar Support Alliance (DBSA) hosts 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 multiple states. New and expanded roles for peer support include peer forensic specialists and peer relays, who assist people with mental illness who are transitioning to the community after public hospitals or incarceration.
Studies suggest peer support in traditional mental health settings improved commitment and well-being and reduced mental health hospitalizations. Yet existing peer support does not address aspects of shared identity such as race and ethnicity, or experiences of discrimination in treatment settings. Affinity peer support groups created around race and culture do this.
Design peer support that takes into account 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 in the African Diaspora looking for safe spaces to talk about what it’s like to live in. black in America. It is extremely precious to be recovering with people facing this same daily reality. Together, we struggle to stay safe and healthy despite fear of activating the news or leaving our homes where we might be faced with racism – directed at us, or someone like us – at all times.
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 with family issues or racism, while also dealing with the stress of a mental health diagnosis like depression or schizophrenia, trauma or addiction. There is so much healing that we all need to do as a result of over four centuries of living within the context of the white racial framework. When it seemed like every two weeks resulted in another murder of another innocent, unarmed black man, we were all in a bad mood: depressed, angry, terrified of being in public. A person who had seen a new psychiatrist during this time was afraid to mention what they really felt for fear of being seen as “too symptomatic.” Having a place where you can truly be understood – among those who “understand” you, your culture and your needs – is priceless.
Working for trust and a voice in research
Over the past six years, members of Black Voices have worked with researchers from the health equity research laboratory at the Cambridge Health Alliance / Harvard Medical School, and researchers from the 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 pent up questions, concerns and grievances, and they wanted airtime!
A wonderful experience of co-learning gradually unfolded between BV members and researchers, but first it was necessary to establish mutual trust and respect. We had to learn about the research culture. Researchers had to learn our “person-first” language, leaving out the clinical terms of diagnosis that make many people living with mental health issues 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 awareness. BV members were able to see concrete evidence of the measures taken. We could feel, heart to heart, and hear firsthand from the research team what this work means to them, and how our experiences have significantly contributed to mental health care research. Over time, people have felt more optimistic, more empowered, and more excited to collaborate.
Today, BV members welcome participation in the research, but only after having had the opportunity to meet the research team, ask their 1001 questions and feel confident that they are not considered “poor charity cases needing to be saved by a great white savior”. We are looking for respect, transparency and sincerity. We want evidence that the research team is doing their own homework by continually attacking their own privileges and assumptions while being humble enough to recognize that their worldview is limited and biased. There is always more to understand.
Moving forward to make healing connections
In pre-pandemic times, a simple community conversation about mental health in the black community drew more than 100 people. It was a standing room only in the pouring rain: a room filled with young people, elders, caregivers and providers. There were couples and singles with babies, people who were “out” about their mental health issues and others who were not. Many have expressed their questions or concerns.
Since that time, we have moved our forums online, or moved to places that can accommodate anyone who wishes to join us. Time and time again, we have found that people want to learn, grow and heal with each other. They want to be engaged in a mutual exchange without judgment or hierarchy of which they fear other traumas. And they seek a process where their opinions, voices and experiences are not only considered, but are centered, valued and respected. Let’s find a way to deliver this.
From time to time, the Harvard Health Blog invites guest authors who can shed light on different aspects of health, wellness, and the world we live in. With Valeria Chambers, EdM, CAS, CPS, we would like to thank Ana M. Progovac, PhD, senior researcher at the Health Equity Research Laboratory at Cambridge Health Alliance, who worked with Ms. Chambers on the research and history of this position.
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