Community-Based Participatory Research: Making a Difference in Homeless Communities
Launched in 2005, the NIMHD Community-Based Participatory Research (CBPR) Initiative is a vibrant part of the NIMHD portfolio. CBPR has proven to be a viable research method to address health disparities among racial/ethnic minorities, low-income, and rural populations.
Engaging and empowering affected communities to take control of their health is fundamental in making progress to improve the health of populations that experience health disparities. This is the impetus for the NIMHD’s embrace and advancement of CBPR which involves the community as equal partners in every aspect of the research process from planning, design, and intervention to dissemination.
In the health disparities research arena, community engagement is pivotal because the community is the intended beneficiary and the reason scientists conduct research. It is therefore essential that the community has an active voice in the entire research process which is a paradigm shift from the way in which research has traditionally been conducted.
NIMHD CBPR projects address a wide array of diseases and conditions such as cancer, diabetes, and heart disease, which disproportionately affect health disparity populations. For example, targeting the healthcare needs of African Americans who are homeless with serious mental illness is the focus of an innovative and inspiring NIMHD CBPR project that addresses the social disparities of homelessness.
Integrated Health Care for African Americans with Serious Mental Illness who Are Homeless in Chicago’s Edgewater-Uptown Neighborhood aims to adopt a CBPR approach to develop an intervention to reduce healthcare disparities among a highly marginalized population in Chicago’s Edgewater-Uptown neighborhood.
“African Americans are disproportionately affected by homelessness, with as many as 50 percent of homeless people in Illinois being African American,” said Dr. Patrick W. Corrigan, Distinguished Professor of Psychology at the Illinois Institute of Technology in Chicago, and the project’s co-principal investigator. “One neighborhood especially hard-hit is the Edgewater-Uptown area of Chicago with among the highest rate of homeless people with co-occurring mental illness in the country. While integrated care programs have been proposed and developed for this population, they have had limited impact, in part, because they have not fully incorporated the voice of the homeless in their development and implementation. Thus, this CBPR project is meant to target the healthcare needs of African Americans who are homeless with serious mental illness.”
According to Dr. Corrigan, people who are homeless have high incidence and prevalence rates of physical illnesses that are further exacerbated by co-occurring serious mental illnesses. Minority ethnic status further compounds disparities in this group, with the rate of illness and death among African Americans who are homeless with serious mental illness at catastrophic levels.
The CBPR project is a partnership among the Illinois Institute of Technology, Advocates for Human Potential, and Heartland Health Outreach, which offers primary care, oral health, and behavioral health services in more than 120 locations throughout the Chicago area, including a state-of-the-art primary care and oral health center in the Edgewater-Uptown neighborhood. It is also the lead agency for Together 4 Health, a collection of more than 30 service providers offering care to low-income Chicagoans as part of Illinois’ response to the Patient Protection and Affordable Care Act. For the project, a Community Research Team (CRT) was established to oversee all facets of the research as well as planning, education, outreach, and dissemination efforts. The eight-member CRT is comprised of African Americans from Chicago’s Edgewater-Uptown neighborhood who are currently or have been homeless with serious mental illness, referred to as “lived experience”, and other key stakeholders. The CRT is co-chaired by Dr. Corrigan and Raymond Burks, an African American with lived experience and a member of Heartland Health Outreach’s Consumer Advisory Board.
The team has been involved with identification of health problems, development of an interview guide for qualitative study, co-facilitation of focus groups, and identifying qualities of a peer navigator based on focus group data.
The CRT completed the qualitative arm of its research, focus groups and key informant interviews, to help define the problem. Focus groups included both people with lived experience and providers in the same group so each group could react to the insights of others.
Some key findings from the focus groups and key informant interviews include:
- Specific healthcare needs of African Americans who are homeless with serious mental illness: Eye care, dentistry, podiatry, gynecological services, HIV-AIDS services, mental health and substance abuse services, and preventive care.
- Hurdles that prevent the use of existing resources for African Americans who are homeless with serious mental illness: Limited services that are hard to access with long waits, behavioral and primary healthcare services that are not coordinated, an insurance and payer system that is lacking, and overreliance on emergency rooms.
- Possible solutions on behalf of healthcare agencies, government agencies, or community groups: Open more facilities, coordinate care, make reminder calls for appointments, facilitate access to Medicaid and other insurance supports, develop in-the-community outreach, have outreach provided by peers, and develop programs of peer support.
- Assets of peer navigators: Personal experience, empathy, tolerance, hope, people skills, dedication, passion, and street wisdom.
- Skills needed for peer navigators: Knowledge about resources and access, communication skills, crisis and stress management skills, and computer skills.
“The qualitative research informed us that Peer Navigators (PNs) should be utilized to connect people who are homeless with mental illness to their healthcare needs,” said Dr. Corrigan. “Navigators are committed to time and relationship, recognizing that a quality working relationship takes time and requires a one-to-one relationship. They help people get to their appointments and engage with their providers. This may require navigators to accompany the person into the examining room. Navigators help people access their entitlements and do what is needed to fill prescriptions. They realize health problems are not neatly compartmentalized, and that those pertaining to shelter, nutrition, and personal safety worsen health. Hence, navigators liaise with other service organizations to address these needs as they arise.”
Co-investigators of the project developed a PN training manual and workbook along with the CRT. In July 2014, PNs began testing the program in a Randomized Control Trial. The remainder of the second year of the project will focus on developing fidelity criteria and intervention design and measures, strategizing recruitment, and conducting a pilot intervention. To date, 59 subjects have been enrolled into the study. Researchers anticipate concluding study enrollment in November 2014.
“Our goal is to develop an intervention for African American homeless people with mental illness that is grounded in integrated care to help reduce health disparities in this population,” said Dr. Corrigan. “Peer navigators are a direct pipeline into righting health disparities. They are people who have been there—people of color—helping peers meet their health goals.”
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