CBPR 101 Sitting Bull College 11-6-2019.pptx

Overview of Community Based Participatory Research CBPR for a Tribal College

1. Community-Based Participatory Research (CBPR): A Grounding for Action and Social Change Bonnie Duran DrPH Professor, University of Washington School Social Work & Public Health Director, Center for Indigenous Health Research Indigenous Wellness Research Institute www.iwri.org Sitting Bull College 11/6/19 1

2. 4CC Project Dine Unity Project et. al Madame Chair and the Navajo Nation HRRB Social Location

3. Define and describe the role of Science in Colonization Rationale for CBPR Methods: Developing and Maintaining Partnerships Objectives 3

4. Rationale for Partnership Research 4

5. Mistrust of Research 5 History is written by people in power Research Controlled

6. Colonial Matrix of Power Control of Economy -land appropriation, labor exploitation, control of natural resources Control of Authority -government, normative social institutions, army Control of Gender and Sexuality - family, education Control of Subjectivity and Knowledge - epistemology, education and formation of subjectivity Quijano A. Coloniality and modernity/rationality. Cultural Studies 2007;21(2-3):168-178.

7. Assumptions of Western Episteme Western values and culture are universal and the pinnacle of social evolution; Science is neutral; Subjectivity is universal and transparent; Resistance is ignorance; Learning is uni -linear

8. Western Knowledge Construction and Examples of Colonizing Research

9. Epistemicide 9

10. Colonizing Research Garth, T. R. (1923). A Comparison of the Intelligence of Mexican and Mixed and Full Blood Indian Children. Psychological Review, 30 , 388-401. Parker, T. (1891). Concerning American Indian Womanhood-An Ethnological Study. American Gynecology and Pediatrics, 5 , 330-341.

11. Colonization through “Science” 11

12. Methodologies of a Predatory Discourse 12

13. Key Ethical Rationale

14. Knowledge Democracy The understanding of the world is much broader than the Western understanding of the world. There is no global social justice without global cognitive justice. A crucial epistemological transformation is required to reinvent social emancipation on a global scale. 14

15. Epistemic Injustice Distributive epistemic injustice : “the unfair distribution of epistemic goods such as edu­cation or information” Discriminatory epistemic injustice : a more specifically epistemic kind of wrong, which itself comes in two kinds: Testimonial injustice Hermeneutical injustice 15

16. Epistemic Injustice Testimonial Injustice : a reduction in the credibility of a speaker due to prejudice in the hearer Hermeneutical Injustic e: a reduction in the intelligibility of the experience of a person who is a member of a marginalized group, either to herself or to others, due to a lack of hermeneutical resources in the community e.g. Sexual Harassment 16

17. Epistemic Injustice Knowledge, race and social position Interpreter, health educator, health systems navigator, medicine person… …driver Nursing outlook, June 1961

18. On Models Models are “an idealized representation of reality that highlights some aspects and ignores others.”* “ Models of course are never true, but fortunately it is only necessary that they be useful”** 18 * Pearl, J. (2000). Causality: Models, reasoning, and inference. Cambridge, England: Cambridge University Press. ** Box, G. E. P. (1979). Some problems of statistics and everyday life. Journal of the American Statistical Association, 74, 1–4

19. Community-Based Participatory Research (CBPR) “ CBPR refers to a partnership approach to research that equitably involves community members, organization representatives, and researchers in all aspects of the research process.”* Israel BA, Eng E, Schulz AJ, et al., eds. Methods in Community-Based Participatory Research for Health. San Francisco, Calif: Jossey-Bass; 2005 19

20. CBPR Definitions 20 “ Systematic inquiry, with the participation of those affected by an issue for the purpose of education and action or effecting change.” Green et al., 1994, 2003 “ A collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.” AHRQ Report, 2004

21. Participatory Research is an Umbrella Term: Action Research Participatory Action Research Emancipatory Research COMMUNITY-BASED PARTICIPATORY RESEARCH popular epidemiology cooperative inquiry empowerment evaluation Practic e Based Research Networks Patient Centered Outcomes Research PARTICIPATORY RESEARCH

22. University Control Community Control CBPR Spectrum of CBPR Relationships Shared University/Community Control 22

23. Spectrum of Participation: (Cornwall 2008) Compliance Co-option Consultation Co-operation Co-learning Collective action Cornwall, A (2008) Unpacking “Participation” Models, Meanings and Practices. Community Development Journal; 43(3): 269–283. “Token” involvement of knowledge users Possible “Token” involvement of academic researchers Equitable Co-governance

24. Emphasizes local relevance and ecological perspective that recognizes multiple determinants Involves system development through cyclical and iterative process Disseminates findings and knowledge to all Involves long-term process and commitment Principles of CBPR Israel, Schulz, Parker, Becker, Allen, Guzman, “Critical Issues in developing and following CBPR principles,” Community-Based Participatory Research in Health, Minkler and Wallerstein, Jossey Bass, 2000. 24

25. Recognizes community as a unit of identity Builds on strengths and resources Facilitates partnership in all research phases Promotes co-learning and capacity building Seeks balance between research and action Principles of CBPR 25

26. Don’t plan about us without us All tribal systems shall be respected and honored, emphasizing policy building and bridging, not a policy wall Policies shall not bypass Tribal government review and approval prior to implementation Tribally specific data shall not be published without prior consultation Data belongs to tribe Principles for Tribes Turning Point Collaboration for a New Century of Public Health, Spring Forum 2001, NACCHO,W.K.K Kellogg, Robert Wood Johnson Foundations 26

27. Who chose the problem to be studied? How is the budget divided? What is the etiologic or causal theory? Is there an intervention or service component? Where are the results disseminated? Who designed the intervention? Who made the research policy decisions? (e.g. is there a control group?) Who writes papers/makes presentations? Who owns the data? Community-Placed vs. P articipatory 27

28. Capacity & Readiness Collaboration Trust & Mistrust Political & Policy Social & Structural Health Issue Importance Context Social-Economic Status, Place, History, Environment, Community Safety, Institutional Racism, Culture, Role of Education and Research Institutions National/ Local Governance/Approvals of Research; Policy & Funding Trends Community/Academic, History of Organizing Partnership Capacity Perceived Severity by Partners Historic Trust / Mistrust between Partners

29. Relational Partnership Processes Partnership Structures Relationships Individual Characteristics Health Care Agency Government Community CBOs Funders Academic How we interact Safety Respect/ Trust Community Voice / Influence Flexibility Dialogue & Listening/ Mutual Learning Conflict Management Leadership Power Shared/ Stewardship Collective Reflection/ Reflexivity Participatory Decision- making Task Roles Recognized

30. Partnership Structures Relationships Individual Characteristics Health Care Agency Government Community CBOs Funders Academic Formal Agreements Partnership Values Bridging Social Capital Time in Partnership Diversity: Who is involved Complexity Resource Management % Dollars to Community CBPR Principles Structural Partnership Processes

31. Intervention & Research Integrate Cultural Knowledge Culture-Centered Interventions Empowering Processes Partnership Synergy Appropriate Research Design Community Involved in Research Processes Outputs Empowering Co-Learning Processes lead to Partnership Synergy Processes that honor cultural knowledge and community voice, fit local settings, and use both academic & community language lead to Culture-Centered Interventions Community Members Involved in Research leads to Research/Evaluation Design that Reflects Community Priorities Bidirectional Translation, Implementation & Dissemination

32. Outcomes Long -term Intermediate Policy Environment Sustained Partnership Empowerment Shared Power Relations in Research Cultural Reinforcement Individual Partner / Agency Capacities Research Productivity Community/Transformation Social Justice Health / Health Equity Future Policies / Social Transformation/ Research Meeting Community Needs University & Community Environments Sustained Partnership & Projects Individual, Organizational, Community Stronger Community Voice in Research/ Knowledge Democracy Growth in Skills and Capacities Health Behaviors and Health Status Changes Research Outcome, Papers, Grant Applications & Awards

33. Partnership Structures: Diversity: Who is involved Complexity Formal Agreements Resource Management % Dollars to Community CBPR Principles Partnership Values Bridging Social Capital Time in Partnership  Social-Structural: Social-Economic Status, Place, History, Environment, Community Safety, Institutional Racism, Culture, Role of Education and Research Institutions P olitical & Policy: National / Local Governance/Approvals of Research; Policy & Funding Trends Health Issue: Perceived Severity by Partners Collaboration: Historic Trust/ Mistrust between Partners Capacity : Community History of Organizing / Academic Capacity/ Partnership Capacity Partnership Processes Contexts Outcomes Intervention & Research Relationships: How we interact Safety Respect / Trust Community Voice / Influence Flexibility Dialogue and Listening / Mutual Learning Conflict Management Leadership Self & Collective Reflection/ Reflexivity Participatory Decision- Making Task Roles Recognized Commitment to Culture-Centeredness Individual Characteristics: Motivation to Participate Cultural Identities/Humility Personal Beliefs/Values Spirituality Reputation of P.I. Processes that honor cultural knowledge & community voice, fit local settings; and use both academic & community language lead to culturally-centered Interventions Co-Learning Processes lead to Partnership Synergy Community Members Involved in Research Activities leads to Research/Evaluation Design that Reflects Community Priorities Bidirectional Translation, Implementation & Dissemination Intermediate System & Capacity Outcomes Policy Environment: University & Community Changes Sustainable Partnerships and Projects Empowerment – Multi-Level Shared Power Relations in Research /. Knowledge Democracy Cultural Reinforcement / Revitalization Growth in Individual Partner & Agency Capacities Research Productivity: Research Outcomes, Papers, Grant Applications & Awards Long-Term Outcomes: Social Justice Community / Social Transformation: Policies & Conditions Improved Health / Health Equity Visual from amoshealth.org 2017 CBPR Conceptual Model Partnership Structures Relationships Individual Characteristics Health Care Agency Government Intervention & Research Outcomes Long-term Intermediate Policy Environment Sustained Partnership Empowerment Shared Power Relations in Research Cultural Reinforcement Individual / Agency Capacity Research Productivity Adapted from Wallerstein et al, 2008 & Wallerstein and Duran, 2010 Community CBOs Contexts Capacity & Readiness Collaboration Trust & Mistrust Political & Policy Social & Structural Community Transformation Social Justice Health / Health Equity Health Issue Importance Funders Integrate Cultural Knowledge Culture-Centered Interventions Empowering Processes Partnership Synergy Appropriate Research Design Community Involved in Research Academic Partnership Processes Processes Outputs

34. Developing and Maintaining Partnerships with Communities Bonnie Duran Dr. PH, Professor UW SSW & SPH

35. How do we start?

36. Self Reflection Self-reflecting on our own and our institutional base’s capacities, resources, and potential liabilities as health professionals/academics interested in engaging with the community, including identifying historical and current relationships between the university and community;

37. Self Reflection Identifying potential partners and partnerships through appropriate networks, associations, and leaders;

38. Relationships Insider - Outsiders Ally Insider Outside Institutional Government

39. Where does the research come in? Negotiating a research agenda based on a common framework on mechanisms for change; Where does community assessment come in? STEP UP AND STEP BACK

40. Where does the commitment show up? Using up, down, and peer mentoring and apprenticeship across the CBPR partnership. What else do you do beyond the research?

41. How is power used? Creating and nurturing structures to sustain partnerships, through constituency building and organizational development. Informal capacity development - Gifting Third Space…. Universalizing their subjectivity

42. CBPR & You 45

43. Experience and preliminary plans for Community Engagement? Quick review of your CEnR experience Aspirations for future engagement 46

44. History of Medicine 2000 B.C. -Here, eat this root. 1000 A.D. -That root is heathen. Here, say this prayer. 1850 A.D. -That prayer is superstition. Here, drink this potion. 1940 A.D. -That potion is snake oil. Here, swallow this pill. 1985 A.D. -That pill is ineffective. Here, take this antibiotic. 2000 A.D. -That antibiotic is artificial. Here, eat this root.

45. May all Beings Be Happy 48