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

1 / 30
About This Presentation

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


Definitions-necessary to foster common understanding for change (PISAB, 2004) ... Developing a common language and understanding. Developing and cultivating trust ... – PowerPoint PPT presentation

Number of Views:179
Avg rating:3.0/5.0


Transcript and Presenter's Notes

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

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

  • 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 Peoples Institute for Survival and Beyond
    (New Orleans, LA)
  • Grassroots leadership
  • Undoing racism
  • Common definitions
  • Learning from history
  • Culture sharing
  • Accountability
  • Gatekeeping

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

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, 2004)
  • Prejudice an attitude which is based on limited
    information, often on stereotypes, but not always
  • 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 (contd)
  • 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
  • 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
  • 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
  • researcher seeks community assistance in problem
    definition, research design, contributing factors
    and potential solutionscommunity becomes the
    collaborator in researchempowering and enabling
    and NOT advisory in nature (Hatch et al, 1993)

  • 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)
  • 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
  • Doctors 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

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

AIM 1 Use Breast Cancer Registry to
AIM 2 Identify Women using Direct Contact and
  • Breast Cancer Care Providers
  • Nurses
  • Physicians
  • Ancillary care services
  • (Those identified along the care trajectory)
  • Breast Cancer Patients
  • African American
  • White
  • African American pts
  • Mail
  • Trained member of Community Collaborative
  • White pts
  • Mail
  • Trained member of Community Collaborative
  • Data collection
  • Critical Incident Interviews (3 stages)
  • Data collection
  • In-depth interviews

Surgery outcomes by race
Surgery Outcomes- White Women (2002)
Surgery Outcomes - Black Women (2002)
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
Partial Mastectomy, NOS
Reexcision of Biopsy Site
Total (simple) Mastectomy w/out
No Surgery
Total (simple) Mastectomy, NOS
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
  • 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
  • Specific BEHAVIORS
    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

  • 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
Write a Comment
User Comments (0)