Engaging African Americans with Mental Illness as Research

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, lsheehan@iit.edu

Sonya Ballentine, sballent@iit.edu