It’s been a troubling year for millions of Americans, marked by government settlements of inequalities in justice, health care, and, most definitely, mental health. None of these inequalities are new. It is estimated that only 22% of black Americans – less than one in four – who need psychiatric care actually receive treatment. In addition to the financial and insurance barriers to treating mental illness, a long history of discrimination in medicine makes it difficult for some people of color to build trusting relationships with health care providers. This is one of the reasons peer support has become increasingly important to meet unmet needs.
What is Peer Support for Mental Health?
Peer support is a mutual relationship – that is, people with similar experiences listen, share, and encourage one another. In the United States, peer support training, certification requirements, and availability vary by state. For example, in Massachusetts, mental health peer support groups are supported by certified peer specialists (CPS). After training and certification from the Massachusetts Department of Mental Health (DMH) through Kiva Centers, CPS enables courses and support groups in recovery learning communities across the state. They also work in hospitals, day care programs, emergency services, and DMH operated dormitory services.
The National Alliance for the Mentally Ill (NAMI) offers generally available peer-to-peer and reconnection support group programs. The local chapters of the Depression and Bipolar Support Alliance (DBSA) have peer and parent support groups for families and people living under these conditions. The National Empowerment Center has a directory of peer-response sites that provide short-term overnight crisis support in several states. New and expanded peer support roles include forensic peers and peers helping people with mental illness transitioning from state hospitals or incarceration to the community.
Studies suggest that peer support in traditional mental health settings improves engagement and well-being and reduces mental health hospital stays. Existing peer support does not, however, take into account aspects of common identity such as race and ethnicity or experiences of discrimination in treatment settings. Affinity peer support groups established around race and culture do this.
Develop peer support that takes into account the effects 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 black in America. It is tremendously valuable to be in the recovery process with people facing the same daily reality. Together we struggle to stay safe and healthy despite the fear of turning on the news or stepping outside our homes where we could at any time be exposed to racism directed against us or someone who looks like us.
How do affinity groups support recovery and healing? Members of Black Voices say it is important to have a group where they can talk about their challenges and frustrations in dealing with family matters or racism while dealing with the stress of a mental health diagnosis such as depression or schizophrenia, trauma or addiction deal. There is so much healing that we must all do because we have lived in the context of the white racial framework for over four centuries. When it looked like every other week had a new murder of another unarmed, innocent black person, we were all crazy: depressed, angry, scared of being in public. A person who had seen a new psychiatrist during this period was afraid to mention how they really felt because they feared being seen as “too symptomatic”. Having a place where you can truly be understood – among those you “get”, your culture, and your needs – is invaluable.
Work towards trust and a voice in research
For the past six years, Black Voices members have worked with researchers from the Cambridge Health Alliance / Harvard Medical School’s Health Equity Research Lab, as well as researchers from the Johns Hopkins Bloomberg School of Public Health and the Albert Einstein College of Medicine. The members were initially skeptical of the researchers. People had a lot of questions, concerns, and pent-up complaints and wanted some airtime!
A wonderful co-learning experience gradually developed between BV members and the researchers, but first mutual trust and respect had to be established. We had to learn about research culture. Researchers had to learn our “person-first” language, omitting the clinical diagnostic conditions that make many people with mental health problems feel objectified – more like a label than a human. The further the relationship developed, the more we all felt compelled to exchange ideas for future work and public relations. BV members could see concrete indications of measures taken. We were able to feel heart-to-heart and hear directly from the research team what this work means to them and how our experiences have made a significant contribution to mental health research. Over time, people felt more hopeful, empowered, and excited to work together.
Today BV members welcome participation in the research, but only after they have had the opportunity to meet the research team, ask their 1,001 questions, and feel confident that they are not being viewed as “poor charity cases that are being run by a big one white rescuers must be rescued ”. We pay attention to respect, transparency and honesty. We want evidence that the research team is doing its own homework, continually addressing its own privileges and assumptions, while being humble enough to acknowledge that their worldview is limited and biased. There is always more to understand.
Go forward to make healing connections
In days leading up to the pandemic, a simple community conversation about mental health in the black community drew well over 100 people. There was only standing room despite the pouring rain: a room full of young people, elders, carers and providers. There were couples and singles with babies, people who were “out” because of their mental health problems, and others who weren’t. Many voiced their questions or concerns.
We have since put our forums online or have switched to venues suitable for anyone interested in joining us. Time and again we have found that people want to learn, grow and heal together. They want to engage in mutual give and take without judgment or hierarchy in order to fear further trauma. And they are looking for a process in which their opinions, voices and experiences are not only taken into account, but centered, valued and respected. Let’s find a way to do this.
From time to time, the Biomedarticles invites guest authors who can shed light on various aspects of health, wellbeing, and the world we live in. Together with Valeria Chambers, EdM, CAS, CPS we would like to acknowledge this Ana M. Progovac, PhD, a senior scientist at the Health Equity Research Lab at the Cambridge Health Alliance, who worked with Ms. Chambers on the research and historical background for this post.