Building Partnerships:Empowerment & Change through Community-Based Participatory

Research (CBPR)

Tracy Schroepfer, PhD, MSW, MAUniversity of Wisconsin-Madison

School of Social Work

Agenda

Issue

Model Description

Important Considerations

Issue

Wisconsin Cancer DisparitiesAfrican American males have higher

rates of prostate cancer than whites & die at twice the rate

African American women less likely to get breast cancer than white women, but more likely to die

American Indian men more likely diagnosed with colorectal cancer than any group

Asian American women have highest rates of cervical cancer of any group

WI Comprehensive Cancer Control Plan

Acknowledges problems exposed by presence of disparate cancer burden in WI

Seeks to “ensure that priorities and strategies developed in the plan work to eliminate health disparities”

Model Description

Research Model NeededRecognition issue cuts across

traditional boundariesRequires collaborations with

communitiesNeed for research model that:

Is replicableSensitive to unique culture and

climate of each communityAdopts a holistic approach

Challenges for Minority Communities

Lack resources

May not be many community members conducting research

Researchers already have set agenda, not necessarily compatible with community’s needs

Community Based Participatory Research (CBPR)

PrinciplesCollaborative, partnership approachJoint involvement in processPartners contribute expertiseShare responsibilities & ownershipIncrease understanding of issueLocal community capacity buildingEmpowering processBalance between research and

action

Reporting & ActionReporting & Action

Step 1: Relationship Building

Components of Process

Travel to community & present project

Community defines its boundariesMemorandum of Understanding

(MOU) developedCommunity funds distributedYoung community members

actively engaged in the project

Pilot Communities

Sankofa ProjectWI Coalition of Mutual Assistance

AssocLatino Health Council of Dane County Gerald Ignace Health Center

MilwaukeeScenic Bluffs Community Health

Clinics

New CommunitiesLac Courte Oreilles Band of Lake

Superior ChippewaBad River Band of Lake Superior

ChippewaRed Cliff Band of Lake Superior

ChippewaSixteenth Street Community

Health CenterAmish Community (in process)

Step 2: Assessing Community Readiness

Components of ProcessPurpose: Measures degree

community is ready to address cancer health disparities

Instrument: Community Readiness Assessment (CRA) developed by Colorado State University’s Tri-Ethnic Center for Prevention Research

6-10 community leaders interviewed

Young professional community members trained to conduct interviews

Six DimensionsCommunity efforts to address cancer

Community knowledge of efforts

Leadership

Community Climate

Knowledge of the Issue

Resources for prevention efforts

Cultural beliefs, values & perceptions

Stages of Community Readiness

9. High Level ofCommunity Ownership

9. High Level ofCommunity Ownership

4. Preplanning4. Preplanning

5. Preparation5. Preparation

6. Initiation6. Initiation

8. Confirmation/Expansion

8. Confirmation/Expansion

7. Stabilization7. Stabilization

3. Vague Awareness3. Vague Awareness

2. Denial / Resistance2. Denial / Resistance

1. No Awareness1. No Awareness

Stage 2: Denial & Resistance Some community members

recognize it is a concern, but little recognition it might be occurring locally.

Goal: Raise awareness the problem or issue exists in this community.

Intervention Possibilities: Approach and engage local educational & health outreach programs to assist in the effort with flyers, posters, or brochures.

Prepare and submit articles for church bulletins, local & club newsletters, etc.

Present information to community groups.

Step 3: Analysis & Readiness Report

Preliminary Results

Communities score low on readiness scale

Cultural beliefs, values & perceptions play an important role

Communities possess strengthsInterventions: thinking out of the

box

Step 4: Assessing the Quality of Cancer Care

Components of Process

Purpose: Gain understanding of, and knowledge about, cancer treatment experiences of individuals from medically underserved communities

Interview 75 community members who have either had cancer, currently have cancer, or have a terminal cancer diagnosis

Areas Being Assessed

Demographics

Cancer Diagnosis & Screening

Cancer Specialist & Treatment

Social Support

Patient-Physician Relationship

End-of-Life Issues & Care

Data Collection

Survey development

Translation of all surveys

Development of referral sources

Important Considerations

Process Considerations

Funding

Identifying the community

Equitable involvement in research and analysis

Sharing, ownership, and use of findings for action

Building trust and respect

Insider-outsider tensions

Differences in values, priorities, perspectives, assumptions, beliefs and language

Community is ever evolving

Time-consuming process

Relationship Considerations