Project Summary
This community-based participatory research (CBPR) project addresses disparities in integrated health care for African Americans with serious mental illness. An advisory board composed of diverse stakeholders (patients, providers, family, etc.) will convene to develop a CBPR training curriculum. The advisory board will implement the training within selected organizations that comprise Together4Health (T4H), a collaborative group formed by healthcare agencies in the Chicago area. The advisory board will then select two teams of stakeholders to design and implement unique projects using CBPR methods. The CBPR teams will each select a problem specific to healthcare access for African Americans with mental illness, formulate a solution, implement the solution, and evaluate the solution scientifically. CBPR teams are viewed as active participants during all aspects of the research process and are provided with training and capacity to support implementation and evaluation.
The projected output from this project is the development and execution of a training curriculum to teach stakeholder groups to implement CBPR.
Project collaborators include the Center on Adherence and Self-Determination; Advocates for Human Potential, Inc.; Advisory Board (TDAB) members; and Community-Based Participatory Research (CBPR) members at Emmaus Ministries and Heartland Health Outreach.
Engagement Resources
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More information about IIT’s project can be found here.
Project Resources
Heartland Health Outreach Self-Management Curriculum
A community-based participatory research (CBPR) team from Chicago integrated care provider Heartland Health Outreach (HHO), designed this series of self-management workshops to empower African-Americans with serious mental illness to improve their health. The eight-member CBPR team included six African American HHO patients, a HHO clinician, and a researcher. The five-session curriculum was presented by the patients in two-hour sessions to a cohort at HHO. Session topics include:Emmaus Ministries Focus Groups & Surveys
The Emmaus Ministries team used the Inspiring Change manual to conduct focus groups and surveys about the barriers and stigma male survival sex workers experience in accessing health care. The team devised a survey consisting of some standardized measures (RAND survey) and additional demographic and health access related questions. The team received the IRB approval and provided $15 gift cards for completion of the survey. They recruited through flyers, word of mouth, and presence at local food pantries and other community agencies. The Emmaus team ultimately recruited 195 male survival sex workers to complete their 20 to 30 minute survey. The CBPR team members were trained to screen participants and proctor the surveys. Survey proctors traveled to different locations around the city to gain the most representative population as possible. A large majority (95%) of participants had been diagnosed or told they had a mental illness, the most common diagnoses being bipolar (28%), depression (71%) and addiction (39%). Over 60% reported a physical injury and 65% reported a chronic illness in the past year. Participants said they have been prevented from getting care because of lack of insurance (25%) or because insurance wouldn’t cover the treatment (27%). Worry about what others would think of them prevented 30% from getting care. Negative experiences with doctors or hospitals were reported by 39% of participants. Additionally, 38% had missed a medical appointment because of location or transportation issues. Younger participants were more likely to be homeless and less likely to receive treatment compared to their older counterparts.
The Emmaus team also developed questions and conducted two focus groups with African American male survival sex workers. Negative experiences with health providers included not being taken seriously, for example, the doctor underestimating experiences or misdiagnosis/ treatment, or a general feeling that staff did not care about them. Research participants felt attitudes toward men being able to “suck it up” and deal with health problems were a barrier to care, because men were less likely to seek and receive treatment. Participants also talked about having someone listen to them and take them seriously was a big factor in stability of health care services. Furthermore, African American faith communities may promote stigma of mental health and LGBTQ status.
Videos
Engaging Patients with Mental Illness in Patient-Centered Outcomes Research (below)
People with serious mental illness tend to live shorter lives, especially those from ethnic minorities. Illinois Institute of Technology researchers Sonya Ballentine and Patrick Corrigan, PsyD, describe their Eugene Washington PCORI Engagement Award, which involves such people as partners in patient-centered outcomes research.