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Eugenia Eng Professor, Department of Health Behavior and Health Education University of North Carolina at Chapel Hill. The Art and Science of Integrating Community-Based Participatory Research Principles and the Undoing Racism. Nettie Coad The Partnership Project

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The art and science of integrating community based participatory research principles and the undoing racism

Eugenia Eng

Professor, Department of Health Behavior and Health Education

University of North Carolina at Chapel Hill

The Art and Science of Integrating Community-Based Participatory Research Principles and the Undoing Racism

Nettie Coad

The Partnership Project

& Greensboro Health Disparities Collaborative


History

History

  • 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 art trainers educators organizers

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

Grassroots leadership

Undoing racism

Common definitions

Learning from history

Culture sharing

Accountability

Gatekeeping

The ART - Trainers, educators, organizers…


Power social and institutional

POWER: Social and Institutional

  • Access to resources

  • The ability to influence others

  • Disproportionate access to decision-makers to get what you want

  • The ability to define reality for yourself, and for others


Definitions necessary to foster common understanding for change pisab 2004

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

(1)Constructed Racial Oppression:

  • Historical and systemic/NOT individual

  • Penetrates every aspect of our personal, institutional, and social lives

  • A Person of Color is seen as a member of a group, not as an individual

  • People of Color have fewer options or choices


Definitions necessary to foster common understanding for change pisab 20041

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

(2) Internalized Racial Oppression:

  • Carrying negative messages about People of Color

  • Limited choices and have a lowered self-esteem

  • Cycles through generations


Definitions necessary to foster common understanding for change pisab 20042

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

(3) Granted White Privilege:

  • “invisible, weightless knapsack” of special provisions (McIntosh)

  • Default position: “to be White in America is to not have to think about it”

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

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


Definitions necessary to foster common understanding for change pisab 20043

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

(4) Internalized White Supremacy

  • world view is the ONLY world view

  • The standards and norms that Whites live by are the universal standards and norms

  • Illusion of superiority


Definitions necessary to foster common understanding for change pisab 20044

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

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 healthcare disparities

IOM Definition of Healthcare 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

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

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

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

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 - Regional Cancer Registry: 2001, 2002, 2003)


The art and science of integrating community based participatory research principles and the undoing racism

Bringing the Art and Science together…


Story telling sessions

Story telling sessions

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


Storytelling session 3 themes

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

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


C c a r e s process october january

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

2 meetings

5 members

5 meetings 9 members

Budget Committee

2 meetings 7 members

4 meetings, 10 members

Reading Committee

3 meetings 8 members

Analysis and Dissemination Committee

Methodology Group/Committee

Research Question Committee


Ccares research questions

CCARES Research questions

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

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

  • What protocols exist for detecting deviations from reasonable breast cancer care?


The art and science of integrating community based participatory research principles and the undoing racism

AIM 1: Use Breast Cancer Registry to characterize

AIM 2: Identify Women using Direct Contact and outreach

  • Breast Cancer Care Providers

  • Nurses

  • Physicians

  • Ancillary 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 pts

    • CONTACT:

      • Mail

  • Trained member of Community Collaborative

    • Data collection

      • In-depth interviews

    • Data collection

      • Critical Incident Interviews (3 stages)

    ANALYSIS and DISSEMINATION


    The art and science of integrating community based participatory research principles and the undoing racism

    Surgery outcomes by race…

    Surgery Outcomes- White Women

    (2002)

    Surgery Outcomes - Black 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/out

    Removal

    Partial Mastectomy, NOS

    Lumpectomy

    Reexcision of Biopsy Site

    Mastectomy

    Total (simple) Mastectomy w/out

    NoSurgery

    Removal

    Total (simple) Mastectomy, NOS


    The art and science of integrating community based participatory research principles and the undoing racism

    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

    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

    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

    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!


    The art and science of integrating community based participatory research principles and the undoing racism

    Where we are today:

    • Systematic cancer registry review

    • CIT interviews ongoing

    • Developing and expanding the HDC


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