DEVELOPING LEADERSHIP SKILLS FOR AFRICAN AMERICAN PATIENTS WITH

SERIOUS MENTAL ILLNESS

Sonya Ballentine, BSLindsay Sheehan, PhD

Illinois Institute of Technology

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

■ Historically, African Americans have been taken advantage of in research, have been given reason to mistrust researchers, and have been left out of the loop in benefiting from research results.

■ Underrepresented individuals should be involved in research to help reduce unfair barriers.

Community Based Participatory Research

■ Collaborative

■ Unique strengths

■ Importance to the community

■ Improves communities

■ Eliminates disparities

What’s in it for Health Care Providers/Partners?■ Opportunity to learn about research■ Evidence-based perspective on services■ Become more in tune with needs of

patients/clients/community (see them from different perspective)

■ Promote organizational image■ Connections in the community

That’s where CBPR comes in…

■ Real-word relevance■ Motivating/exciting■ Connection to community■ Accountability■ Facilitates research (recruitment, dissemination and

implementation)■ May need community participation for funding

What’s in for the Patients?■ Focus groups with CBPR team members (n=20)

– Builds skills (research, work skills, team work, leadership, manage emotions, responsibility, discipline, perspective taking)

– Sense of purpose, growth, and empowerment– Opportunity to make decisions that can help the community– Career opportunities– Social network and community connections– Gain respect and pride in community– Replaces other activities by providing day structure (drinking, drugs,

etc.)– Improves mental health (focus on others and forget your problems)

Inspiring Change CBPR Model

Community Stakeholders

Lived Experience

Leader

Academic Researcher

Community Advocate

The Team

■ Recruitment■ Selection■ Compensation

Inspiring Change Manual Chapter 1: Getting Started

Chapter 2: Introduction to CBPR

Chapter 3: Working Together

Chapters 4-6: Understanding a Problem, Testing a Solution, Designing a Solution

Chapter 7: Research Ethics

Chapter 8: Collecting Data

Chapter 9: Sustainability

Chapter 10: Understanding Results

Chapter 11: Sharing Results and Taking Action

But, there were unexpected challenges…■ Lived experience leaders enter projects at a disadvantage in terms of:

– Power– Education– Knowledge of Workplace Norms– Research Experience– Ongoing Symptoms

■ As a result, they may become:– Frustrated– Disengaged – Token leaders

This where our Leadership Advisory Board came in….

Curriculum Development

■ Literature Review, Key Informant Interviews, and Lived Experience Perspective

■ Three key components of leadership development trainings: – (1) Mentoring, – (2) Action Learning and Practice.– (3) Feedback.

Mix of presentation and role play

Leadership Topics■ Introduction to Research and CBPR■ Leadership Styles■ Communication Skills■ Project Management■ Leading a Meeting■ Professionalism■ Self-Care■ Mentorship■ Solving Problems and Managing Conflict

Leadership Styles

Transformational Style“Move and Shake”

Project Management■ Time Management

■ Action Plan

■ Making an Agenda

■ Activity: For your research project, you are having a partner agency come to train your team on data collection. You are in charge of finding a place and time for the training, and for making sure your team members are all there and comfortable. List the steps that you would need to take. Write down how far in advance of the training you would complete each task. Discuss with your group.

Leading a Meeting

■ Tasks of Facilitator■ How to Engage a Group■ Basic Meeting Rules/ Comforts

Professionalism Skills PracticeRight before the meeting, Gary’s friend sends him a picture on his phone and he starts laughing. Other team members hear him laughing and ask what it is. The picture has some nudity and crude humor but Gary decides to share it because they still have a minute before the meeting starts.■ What might other people on the project think about Gary’s

behavior?

■ What could Gary have done/ do differently?

Solving Problems

■ Define the problem■ Brainstorm solutions■ Review solutions■ Use the chosen solution■ See how your solution

worked

“Faith is taking the first step even when you don’t see the whole staircase.”

Martin Luther King Jr.

Managing Conflict

• Competing• Accommodation• Avoiding• Collaborating• Compromising

Thomas-Kilmann Conflict Management Approach

Managing Conflict Skills PracticeAs the lived experience leader, you feel discouraged. The academic researcher doesn’t get you and sometimes makes jokes that are offensive. The social worker on your team talks down to you and treats you like a secretary.

Next Steps, Reflection and Graduation

Mentorship Plan

■ Weekly one-on-one check-in■ Cross-walks with the training■ Support in facilitating the meeting,

organization, problem-solving, engaging the team, communicating, self-care, etc.

■ Individualized supports

“Show me a successful individual and I’ll show you someone who had real positive influences in his or her life. I don’t care what you do for a living—if you do it well I’m sure there was someone

cheering you on or showing the way. A mentor.”

Denzel Washington

Continuing Education

■ Presentation skills (talking about your project)

■ Computer skills

■ Professional bio, resume, and elevator speech

■ Others based on need

Two CBPR Projects

■ Prepare 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.

Evaluation■ 50 invited

■ 30 enrolled

■ Day 1: n=19

■ Day 2: n=18

■ Trainees were African Americans with serious mental illness and were 63% (n=12) male and 37% (n=7) female, with an average age of 48.

■ Fidelity to manual was 86%.

Satisfaction and Usefulness

Day 1 Day 2

Item Mean

Overall usefulness 1.42

Overall satisfaction 1.58

Overall understanding 1.58

Session 1: Introduction to CBPR (usefulness) 1.33

Session 2: Introduction to Leadership (usefulness) 1.39

Session 3: Communication Skills (usefulness) 1.53

Session 4: Project Management 1.32

Items were on 7-point scale (1= very, 7 = not at all; 1=very useful, 7= not useful at all)

Item Mean

Overall usefulness 1.06

Overall satisfaction 1.24

Overall understanding 1.1

Session 5: Leading a Meeting (usefulness) 1.29

Session 6: Professionalism and Self-Care (usefulness) 1.59

Session 7: Mentorship (usefulness) 1.8

Session 8: Solving Problems and Managing Conflict 1.5

Feedback■ “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.”

■ “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.”

■ Some wanted more time

■ We used a fidelity checklist to determine adherence to the curriculum during the two-day training. The overall percentage for fidelity was 86%.

Our Work■ Chicago Health Disparities Center (http://www.chicagohealthdisparities.org/)

■ National Consortium on Stigma and Empowerment (http://www.stigmaandempowerment.org/)

QUESTIONS AND DISCUSSION