the art and science of integrating community-based participatory research principles and the undoing...

The Art and Science of Integrating Community-Based Participatory

Research Principles and the Undoing Racism

Eugenia EngProfessor, Department of Health Behavior and Health

EducationUniversity of North Carolina at Chapel Hill

Nettie CoadThe Partnership Project & Greensboro Health Disparities Collaborative

HistoryHistory

Four year partnership between The Partnership Project, UNC, and community partners

ALL members take part in Undoing Racism training

Full Value Contract Goal: To build community capacity to

hold institutions (like health care) accountable. Research is one component of this process.

The ARTThe ART - Trainers, educators, - Trainers, educators, organizers…organizers…

The People’s The People’s Institute for Institute for Survival and Survival and BeyondBeyond (New Orleans, (New Orleans, LA)LA)

Grassroots Grassroots leadershipleadership

Undoing racismUndoing racism Common definitionsCommon definitions Learning from historyLearning from history Culture sharingCulture sharing AccountabilityAccountability GatekeepingGatekeeping

POWER: POWER: Social and InstitutionalSocial and Institutional

Access to resourcesAccess to resources The ability to influence othersThe ability to influence others Disproportionate access to decision-Disproportionate access to decision-

makers to get what you wantmakers to get what you want The ability to define reality for The ability to define reality for

yourself, and for othersyourself, and for others

Definitions-necessary to foster Definitions-necessary to foster common understanding for change common understanding for change (PISAB, 2004)(PISAB, 2004)

(1)(1) Constructed Racial Oppression:Constructed Racial Oppression:

Historical and systemic/NOT individualHistorical and systemic/NOT individual Penetrates every aspect of our personal, Penetrates every aspect of our personal,

institutional, and social livesinstitutional, and social lives A Person of Color is seen as a member of A Person of Color is seen as a member of

a group, not as an individuala group, not as an individual People of Color have fewer options or People of Color have fewer options or

choiceschoices


(2) (2) Internalized Racial Internalized Racial Oppression:Oppression:

Carrying negative messages about Carrying negative messages about People of ColorPeople of Color

Limited choices and have a lowered Limited choices and have a lowered self-esteemself-esteem

Cycles through generationsCycles through generations


(3) (3) Granted White Privilege:Granted White Privilege: ““invisible, weightless knapsack” of invisible, weightless knapsack” of

special provisions special provisions (McIntosh)(McIntosh) Default position: “to be White in Default position: “to be White in

America is to not have to think about America is to not have to think about it”it”

Seen as an individuals, not a reflection Seen as an individuals, not a reflection on White raceon White race

Although hurt by racism, we can live Although hurt by racism, we can live without having to deal with itwithout having to deal with it


(4) (4) Internalized White SupremacyInternalized White Supremacy

world view is the ONLY world viewworld view is the ONLY world view The standards and norms that Whites live The standards and norms that Whites live

by are the universal standards and normsby are the universal standards and norms Illusion of superiorityIllusion of superiority


Prejudice: an attitude which is based on limited information, often on stereotypes, but not always negative– Denies the individuality of a person, their

uniqueness and assets

Oppression: systematic subjugation of one social group by another more powerful social group for economic, political or social benefit

Definitions (cont’d)…Definitions (cont’d)…

Oppression = power + prejudice– The oppressors have the power to define

reality for themselves and others– Members of BOTH groups are socialized

to play respective roles as “normal” or “correct”

Racism = power + racial prejudice– A system of advantage based on race– A system of oppression based on race

IOM Definition of IOM Definition of Healthcare DisparitiesHealthcare Disparities

“…racial or ethnic differences in the

quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention”

IOM Explanation of Findings:IOM Explanation of Findings:

Racial and ethnic healthcare disparities:

Are impacted by bias, stereotyping, prejudice, and clinical uncertainty on the part of healthcare providers

Are not explained by the few studies that suggest that racial and ethnic minority patients are more likely than white patients to refuse treatment

A Social Movement

“If we want to dismantle racism, then we must be about building a movement for social and economic justice and change”

Holding institutions accountable

The Science - C.C.A.R.E.S. (Cancer Care and Racial Equity

Study) A CBPR partnership between local organizations,

community members, and UNC, the Health Disparities Collaborative in designing and submitting an NIH R21 grant application to examine the possible prevalence of and potential explanations for disparities in deviations from reasonable breast cancer care. This study will combine secondary analysis of cancer registry data with the qualitative methods of critical incident interview using a grounded theory.

Funded in September 2006.

Community-Based Participatory Research (in Wallerstein and Duran, 2003)

“CBPR recognizes the importance of establishing relationships beyond that of expert and client, the actual practice between outside researchers and community members remains complex and involves making transparent the POWER differences, recognized or not“ (Scott, 1990)

CBPR continued…CBPR continued…

“researcher seeks community assistance in problem definition, research design, contributing factors and potential solutions…community becomes the collaborator in research…empowering and enabling and NOT advisory in nature” (Hatch et al, 1993)

Background Breast Cancer incidence rates for African

American women 139/100,000 compared to 149/100,000 white women (NC State Center for Health

Statistics, 2002) African American women with breast cancer

were about 1.5 times more likely to die from

this disease than their white counterparts (NC Office of Minority Health and Health Disparities, 2003) Breast Cancer x Race x Stage 2001

0

5

10

15

20

25

30

35

40

45

50

Stage 0 Stage I Stage II Stage III Stage IV

%

Black

White

Breast Cancer x Race x Stage 2002

0

5

10

15

20

25

30

35

40

45

50


%

Breast Cancer x Race x Stage 2003

0

5

10

15

20

25

30

35

40

45


%

(Breast Cancer x Race x Stage - Regional Cancer Registry: 2001, 2002, 2003)

Bringing the Art and Science together…

Story telling sessions

Small group discussions focused upon reflecting and describing experiences of receiving treatment in the local healthcare setting

Storytelling session: 3 Themes

Theme I: Stemming from a legacy of legalized racism prior to 1964, the lack of common history and understanding between Blacks and Whites contributes to a culture of complacency and inferiority between health professionals and patients of color.

Theme II: The absence of a public structure of accountability to prevent /stop racist behaviors and practices contributes to a culture which perpetuates such practices within all sectors of the health care system.

Theme III: “DIS-syndrome”- when people of color enter the health care system and experience disrespectful behaviors (verbal and non-verbal), are dismissed and disbelieved, experience distance when receiving care that is frequently filtered by stereotypes.

Components of the health care system recognized during story telling sessions:

Doctor’s office / private practice Hospital (system, staff, patient experiences) Health clinic OB/Gynecologists Dentists Medical school / medical training Emergency Department (ED) Health care organization Health care services provided within

detention center

Research Question Committee

Methodology Group/Committee

Analysis and Dissemination Committee

Budget Committee

Reading Committee

C.C.A.R.E.S. processC.C.A.R.E.S. process (October – January)(October – January)

4 m

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CCARES Research questions

(1) What are the recommended standards for reasonable breast cancer care for women with stages 0-4 disease? Are there deviations?

(2) For those who discontinued care, are there differences between African American and White women?

(3) What protocols exist for detecting deviations from reasonable breast cancer care?

Breast Cancer Care Providers

NursesPhysiciansAncillary care services(Those identified along the care trajectory)

Breast Cancer Patients

•African American•White

African American pts

CONTACT:Mail

Trained member of Community Collaborative

White ptsCONTACT:Mail

Trained member of Community Collaborative

Data collectionCritical Incident Interviews (3 stages)

Data collectionIn-depth interviews

AIM 1: Use Breast Cancer Registry to characterize

AIM 2: Identify Women using Direct Contact and outreach

ANALYSIS and DISSEMINATION

Surgery Outcomes - Black Women (2002)

LumpectomyMastectomyNo Surgery

Surgery Outcomes- White Women(2002)

Lumpectomy

Mastectomy

No Surgery

Comb of 41 w Recoon, NOS

Comb of 41 w Recoon, Tissue)

Lumpectomy or Excisional Biopsy

Mastectomy, NOS

Modified Rad Mastectomy w Removal

Modified Rad Mastectomy w/outRemoval

Partial Mastectomy, NOS

Reexcision of Biopsy Site

Total (simple) Mastectomy w/outRemoval

Total (simple) Mastectomy, NOS

Surgery outcomes by race…

Research Question 2: For those who discontinued care, are there differences in experiences between African American and White women?

Two CIT interviews each Exploring phases of

– (1) diagnosis, – (2) treatment, – (3) follow-up of breast cancer care

Conducted/facilitated by community research and academic research partners.

Critical Incident Technique (CIT) interviewing

Provides findings that -

Have an EMPIRICAL basis, grounded in CONCRETE events

Focus on BEHAVIORS that are amenable to change

Basic Rationale of CIT

To find out WHY people do something (like choosing to continue cancer treatment), ask about:

– Specific BEHAVIORS

To IDENTIFY CRITICAL REQUIREMENTS of an activity or decision process (like providing good medical care or developing a relationship), ask about:

– Specific BEHAVIORS that made the difference between decision to continue or discontinue care

Opportunities/Challenges...

Developing a common language and understanding

Developing and cultivating trust

Open communication Embracing conflict Maintaining respect and

patience Exercising flexibility And being willing to hear and listen!

Where we are today: Systematic cancer registry

review CIT interviews ongoing Developing and expanding

the HDC

the art and science of integrating community-based participatory research principles and the undoing...

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