January 2018—As PCORI-funded studies produce results of interest to patients and those who care for them, we are updating the stories of those projects. The article below was published in February 2014. You can read an update to this story here.
When Pluscedia Williams was growing up in the Compton neighborhood of Los Angeles, nobody talked about depression. For that reason, Williams had no name to give the problems that first beset her as a young woman: crying, mood swings, not wanting to talk to anyone, or even care for her baby.
“I didn’t know I was depressed,” says Williams, now 64. “In the African-American community,” she adds, “we are told that if you’re down or depressed or whatever, you’re crazy. So, I kept it to myself.”
Even if she had decided to seek care, reaching it would have been difficult. “In the area where I grew up, services were not accessible,” says Williams. Doctor’s appointments, she notes, meant long rides on a train or bus and frequently missed appointments. Worse, prescriptions were often too expensive to fill.
Williams went for years without getting treatment for depression. Then, for years more, she was “lost in the cracks,” she says, haphazardly receiving medication. “They don’t figure out what’s causing it,” she says. “They just give you a lot of pills.”
Not "the way life is supposed to be"
Williams’s story exemplifies some of the challenges of addressing depression in inner-city, under-resourced African American and Latino communities. Loretta Jones, MA, CEO of Healthy African American Families II in South Los Angeles, and Kenneth Brooks Wells, MD, MPH, a psychiatrist and professor of psychiatry and health services at the University of California, Los Angeles, know these challenges well. Over 10 years, they have built a broad partnership to address depression in under-resourced communities in Los Angeles.
“In under-resourced communities, people often either don’t know what depression is, or—because neighborhood conditions are so stressful—can lose perspective and think that this is the way life is supposed to be,” says Jones. For example, Wells adds, South Los Angeles, where half of his project is located, is home to nearly 1.9 million people, over six times the population of New Orleans. But it has no major public hospital, no full-service emergency room, and few primary-care practices; although mental health and substance abuse providers are available, many adults receive their only mental health services in primary care. Forty percent of its residents have been uninsured; how this may change with the Affordable Care Act is yet to be determined.
In under-resourced communities, people often either don’t know what depression is, or—because neighborhood conditions are so stressful—can lose perspective and think that this is the way life is supposed to be.
Loretta Jones, MA Patient/Community Partner
An Academic-Community Participatory Research Partnership
With the support of nearly 100 diverse programs in Los Angeles, Jones and Wells have created an academic-community partnership in an area that includes South Los Angeles and a stretch from Hollywood through downtown. Lead community partners include Elizabeth Dixon, RN, PhD, of QueensCare Health and Faith Partnership and James Gilmore of Behavioral Health Services. The partnership has undertaken a project in which 85 percent of the clients are African American or Latino, and 65 percent have less than $10,000 a year in family income.
The research, funded by PCORI in 2013, expands on an earlier trial designed to increase availability of mental health information and services by helping existing community organizations work together as a network under one common strategy, including ways to provide therapy, case management, clinical assessment, medication management, and outreach for screening and education. The PCORI funding will extend the study, allowing the partnership to follow the clients for three additional years and learn more about how to address client priorities.
The initial work selected 95 service-providing organizations. Half received technical assistance through training—in the form of webinars and site visits—in evidence-based mental health techniques, such as cognitive-behavioral therapy for depression, medication management, alternative health practices, and screening and outreach.
The other half received training in the same techniques, but they also attended meetings facilitated by academic and community leaders. At the meetings, staff discussed their organizations’ challenges, how to tailor the training to the community, and how to build a network across agencies to address the many needs of their clients. Through this face-to-face contact, the staffs cooperated with each another, learning to make referrals across agencies, developing new partnership agreements, and sharing stories about approaches that worked in their communities to implement training in evidence-based strategies to address depression.
Kenneth Wells, MD, MPH, discusses the PCORI-funded study he leads with a community advocate, Loretta Jones, chief executive officer of Healthy African American Families II and of the National Community Center for Participatory Research Excellence. (Photo courtesy of Community Partners in Care)
True Community Engagement—and Guidance
The original project and the PCORI-funded extension were guided by a leadership council made up of academic and community partners, including leaders from about 35 social service agencies. The council directed every major research decision, soliciting and weighing advice from the broader community. The council also took charge of explaining the study and its findings at community and scientific meetings.
Community partners on the council helped identify the participating organizations, which included formal social-service agencies, like primary care practices, homeless shelters, and prisoner reentry programs—but also senior centers, hair salons and barber shops, exercise clubs, and faith-based organizations.
“They were what the community referred to as ‘trusted locations,’” say Jones. In underserved communities, she explains, these sites provide an informal system of mental health support. For example, she says, “The hair salons and barbershops are where people talk about their issues.”
Staff members at many of these sites are aware of the role that they play, Jones and Wells explain, and welcomed a chance to learn evidence-based practices for depression evaluation and to gain a better understanding of therapeutic options, so they can explain them to clients. “We’re enhancing what can be done in the community systems that already exist,” says Wells.
At the end of the year-long original study, which encompassed about 1,000 recipients of services, the academic-community partnership found that the community-network-building approach was associated with better outcomes than support to individual organizations. Behavioral hospitalizations were half as likely, clients were more physically active, and risk factors for homelessness were observed less often.
Williams’s depression now under control, she sits on the project’s leadership council, offering the perspective of a former client. She credits the research with helping her better understand the illness and giving her the courage to speak out and educate others. “I don’t have to be ashamed anymore about what happened to me,” she says. “I can talk about depression freely.”
I don’t have to be ashamed anymore about what happened to me ... I can talk about depression freely.
Pluscedia Williams Patient Partner
Learning From the Community
Engaging with the community led to some surprises for the partners. Originally, Jones, Wells, and the council had planned to compare how well each approach improved clients’ clinical symptoms of depression. From broad community input, they learned that many clients place equal or greater weight on finding and keeping employment, avoiding homelessness, dealing with family issues, and maintaining physical health. In response to that input, says Wells, “we shifted the focus of this project toward those goals.”
The PCORI-funded extension will explore how to support the community infrastructure so that the gains made by individual clients will persist. It will investigate how community systems can address clients’ diverse needs, from mental and physical health issues to homelessness. One goal is to learn how clients with many needs decide which care outcomes are most important to them and how agencies in the community can best meet these needs. The PCORI study will use community partners to interview clients and providers about their experiences in receiving and providing care. It will also expand the project’s leadership council.
Williams believes that the work already has brought about positive change for herself and her neighborhood. Thanks to community workshops sponsored by the council, people are better informed about where they can go for help and more willing to seek it. Most welcome of all, the old silence about emotional difficulties has given way to dialogue.
“It’s encouraging,” says Williams. “Now, people come to the workshops, they come to the symposiums, and they find out what’s available. Everyone’s at the table.”
Posted: February 5, 2014
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