engaging african americans with mental illness as research
TRANSCRIPT
Engaging African Americans with Mental Illness as
Research LeadersMidwestern Psychological Association
April 14, 2018
LINDSAY SHEEHAN, PHD, I L L I N O I S I N S T I T U T E O F T E C H N O L O G Y
SONYA BALLENTINE, BS,I L L I N O I S I N S T I T U T E O F T E C H N O L O G Y
Chicago Health Disparities Centerwww.chicagohealthdisparities.org
PCORI Funding Acknowledgement
◦ This work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3974-IIT).
◦ The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
Purpose
To include African Americans with mental illness in research on health
disparities
Community Stakeholders
Lived Experience
Leader
Academic Researcher
Community Advocate
Inspiring Change CBPR Model
ProblemsPeople with lived experience (patients) enter projects with disadvantages:
1. Social power/ power imbalance
2. Education and research knowledge
3. Workplace norms and resources
4. Symptoms
Lived experience leaders become:◦ Frustrated◦ Disengaged◦ Token leaders
Solutions
Leadership
Mentorship
Organizational Support
Leadership TopicsIntroduction to Research and CBPR
Leadership Styles
Communication Skills
Project Management
Leading a Meeting
Professionalism
Self-Care
Mentorship
Solving Problems and Managing Conflict
FormatPresent material from workbook
Reflective worksheets
Discussion in large group
Skills practice in small groups
Activity summary
Inspiring Change CBPR TrainingIntro to CBPR
Developing a Research Topic
Organizing the Project
Recruiting and Selecting the Research Team
Engaging the Team
Using the Manual and Workbook
FeasibilityInspiring Change Leadership Training
◦ Day 1: 19 attended
◦ Day 2: 18 attended
Inspiring Change CBPR Workshop
21 attended (researchers, providers, lived experience leaders)
Proposals
3 proposals submitted
Fidelity, Satisfaction and FeedbackFidelity to curriculum = 86%
Satisfaction = 1.24 (1= very, 7 = not at all)
Feedback◦ “I think it gave actionable things you can implement. Like how to be
effective. We talked about self-care and stress management and that was great. Overall you can take that for this position, as well as outside of that –it was information you could use in other professional circumstances.”
◦ “Sketching it out—the role playing- three in a group—and I was the leader. So I had to listen to all of their ideas and get to the core of the main subject about – to come together as a unit—it was helpful because that was my first time doing it.”
CBPR ProjectsPrepare to Thrive
Design and pilot a culture-specific group intervention to support anti-retroviral adherence for African Americans living with HIV and mental illness.
Addressing Obesity in Primary Care
Examining perceptions of primary health care obesity services from the perspective of African American young adults with serious mental illness.
Mentorship
Weekly meeting with mentor
Defined roles
Semi-structured agenda (crosswalk with leadership training)
Individualized support
Over life of project
Focus on growth, development and project goals
Organizational Support PlanRole Clarity
Compensation
ResourcesPhysical resources
Access to key people
Dual Roles and Power Differential
Reasonable Accommodations
Mentorship
Recognition and Champion
Onboarding and Ongoing Training
Our Work
Chicago Health Disparities Center (http://www.chicagohealthdisparities.org/)
National Consortium on Stigma and Empowerment (http://www.stigmaandempowerment.org/)
Available to provide Inspiring Change workshop
Lindsay Sheehan, [email protected]
Sonya Ballentine, [email protected]