Indigenous Community Based Participator Research.pptx

CBPR

1. Community-Based Participatory Research (CBPR): A Grounding for Action and Social Change Bonnie Duran DrPH, Associate Professor, University of Washington School of Social Work Director, Center for Indigenous Health Research Indigenous Wellness Research Institute www.iwri.org University of Massachusetts, Lowell October 29, 2015 1

2. Define and describe community-based participatory research (CBPR) for health Rationale for CBPR Explore the history and theory of CBPR How can we train for equity in community engagement? Objectives 2

3. 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 3

4. Participatory Research is an U mbrella T erm: 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

5. CBPR Definitions 5 “ 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

6. 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. 6

7. 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 7

8. University Control Community Control CBPR Spectrum of CBPR Relationships Shared University/Community Control 8

9. 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 9

10. CBPR is an orientation to research changes the role of researcher and researched CBPR is not a method or set of methods Typically thought of as qualitative Fewer epidemiologic examples, but promising CBPR is an applied approach Goal is to influence change in community health, systems, programs, or policies CBPR: What it is and isn’t 10

11. Who chose the problem to be studied? How is the budget divided ? What is the theory of etiology 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 11

12. 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”** 12 * 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

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14. Rationale for Partnership Research 14

15. University Control Community Control CBPR Spectrum of CBPR Relationships Shared University/Community Control 15

16. 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

17. Mixed Methods Design Concurrent/ Parallel Based on Theoretical Transformative Model Interaction throughout Research Phases Qualitative and Quantitative = Equal Priority Sequential and Concurrent Timing of Data Collection Current Mixed Methods Analyses Two Examples: Trust Governance/Approval Processes

18. Quantitative Research: 2 survey’s Key Informant (~15 minutes): Taken by Principal Investigator or Program Director Community Engagement (~ 30 minutes) Taken by PI/PD, 2 nd academic investigator, and 2-4 community partners Conducted from 12/2011 – 8/ 2012

19. Key informant Survey: Predictors http:// iwri.org /health/resources/ cbpr -resources/community/ Project Demographics and Features (49) PI team and partners ethnicity , position, gender, SO, etc. partnership dates, funding, type of research,# of partners, staff diversity, etc. Resource/Decision sharing (4) Who decides hiring/, budgets, resources shared Research Integrity (4) Confidentiality/IRB training, approval decisions Partner Research Roles (13) Community Engaged Research Index (CERI) Governance (15) Formal MOU’s & DSOA’s, dissemination approvals, $ , conflict resolution Formal Training (8) racism/sexism/privilege/cultural humility/CBPR-collective reflection Contact info for Partners

20. Community Engagement Survey: Predictors Context (10) Community Capacity, Project have what it needs to work effectively towards its aims Social & Human Capital (3) Knowledge, skills, connections Alignment with CBPR Principles (8) Builds on resources and strengths, equitable partnerships in all phases of the research, emphasizes what is important to the community, etc. Core values ( 4) shared understanding of the missions and the strategies Power dynamics (9) Power sharing, influence, decision making Dialogue, Listening, co-learning Conflict resolution, emotional intelligence Governance Mechanisms Competency of leadership in diversity, communication, planning, efficiency, financial management, etc.

21. Outcomes: KI & CE Partnership Synergy (5) Come together and work well Culture Centeredness (5) Community theories, ownership, etc. Concrete & Perceived Outcomes (8) Index of Perceived Community/Policy Level Outcomes ( IPCPLO ). Improved services, policy change, health improvement, etc. Personal, Political, Professional Level O utcomes (13) New knowledge, relationships, power, visibility, skills, etc.

22. Qualitative Case Study Inclusion Criteria Seven case studies: Diverse health issue, G eographic region, Populations: American Indian/other communities of color/social identity who face disparities At least 3-year partnership history with projected research for at least 2 years; successful Intervention, capacity-building or policy research Methods : Focus Groups and Partnership meeting observation 13-18 Interviews (university and community) Brief Partnership Survey: self-administered

23. Case Study Research Questions How do context/group processes/ individual issues shape facilitators and barriers to effective CBPR? How do differing contextual conditions and perceptions/meanings interact with partnering processes to produce differing outcomes?

24. Case Studies Healing of the Canoe: Youth Life Skills/Substance Abuse-Washington tribes Men on the Move: Cardio-Vascular/Sustainable Agriculture/Rural-AA Lay Health Worker Intervention: Colorectal Cancer Screening/San Francisco-Chinatown South Valley Partnership Environmental Justice Semi-urban, Southwest - Latino Cancer Coalition and Tribal Approval Processes Rural - Oglala Sioux Tribe Bronx Faith-Based Initiative Diabetes and Medical Apartheid Center for Deaf Health, Rochester

25. Trust Measures and Questions Quantitative Survey: Two scales Views on how trust has evolved (type/when) Level of trust between team members Trust of decisions, comfort asking others to take responsibility, Qualitative Case Studies Questions : How do you describe trust in this partnership? Has it changed over the life of the partnership? How do people relate to the trust types in table?

26. Metrics: Trust Indicators

27. What do we mean by Governance over research process? Multiple factors including, but not limited to: Who approves the project, Control of project resources, types of formal or informal agreements, process of decision-making Quantitative questions: How are approval processes associated with control of project resources? Qualitative questions: How are governance structures constructed and what are the differences of governance for tribal and non-tribal communities? Impact on outcomes?

28. Preliminary Outcomes

29. RIH Survey Response Rates

30. What Predicts CBPR Outcomes? b SE p Capacity : Project has what it needs to work effectively towards its aims .113 .059 .055 Alignment of CBPR Principles : Builds on resources and strengths, equitable partnerships in all phases of the research .230 .068 .001 Level of Involvement : Task roles and communication ( CERI ) .188 .046 .000 Communication Quality : Degree to which partners cooperation to resolve disagreements .059 .039 .137 Stewardship : Use of financial & in-kind resources .086 .048 .072 Partnership synergy : Partners ability to develop goals, recognize challenges, respond to needs , work together .249 .059 . 000 Trust : Level of trust at the beginning of the partnership .113 .063 .073 R2: 0.467

31. Rationale for Partnership Research 31

32. Mistrust of Research 32 History is written by people in power Research Controlled

33. Subjugated Knowledges 33

34. Medicine and Disciplinary Power The basket drum The drum stick The Plumed wands Kethawns Sacrificial Cigarettes Matthews, W. (1893). Some Sacred Objects of the Navajo Tribe. Archives of the International Folklore Association 1 , 227-254.

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

36. NIH Research Bench to Bedside 36 Schillinger , D. (2010). An Introduction to Effectiveness, Dissemination and Implementation Research . P. Fleisher and E. Goldstein University of California San Francisco. http:// ctsi.ucsf.edu /files/CE/ edi_introguide.pdf

37. RATIONALE: Need for CBPR in Implementation Research Challenge of bringing evidence to practice Moving from efficacy to effectiveness trials Internal validity insufficient for translational research External validity: Implementation/Role of context Challenge of community complexities Challenge of what is evidence Evidence-Based Practice vs. m Practice -/Indigenous-/Community-Based Evidence Challenge of one-way orientation Challenge to translate action and policy

38. Diffusion of Service Innovation 38

39. CBPR and Implementations Research 39 Wallerstein, Duran (April 2010) AJPH

40. Dissemination & Implementation of EBI Implementation research is the study of activities and strategies to successfully integrate an evidence-based public health intervention within specific settings (e.g. , primary care clinic, community center, school) . Dissemination research is the study of the distribution of information and intervention materials to achieve greater use and impact of the intervention. 40

41. Ethics & Community Based Interventions Furthermore , community-based prevention involves decisions among groups of people about how to live in society, how the physical environment is built, what food is served in schools, and so on. Thus, the process by which interventions are decided upon and undertaken needs to be treated as a valued outcome. If a community decides to tell people what they can or cannot do, or what they should or should not do, the decisions need to have the legitimacy—the added value—that comes from an open and inclusive group decision-making process . 41 IOM (Institute of Medicine). 2012. An integrated framework for assessing the value of community-based prevention. Washington, DC: The National Academies Press.

42. How can we prepare ? 42 The California Endowment Rodney Hopson, Ph.D. Adapted from:

43. Reflect on your Social Location The social location of the clinician /researcher matters ( intersectionality ) Gender Race Class Ethnicity Education Privilege/target Sexual orientation Etc… What else? 43 Hankivsky , O., & Cormier, R. (2009). Intersectionality: Moving Women’s Health Research and Policy Forward. Vancouver: Women’s Health Research Network. This publication is also available online at www.whrn.ca .

44. Social change is a goal 2. Research plays a role in furthering social change and social justice Ability and duty to recognize asymmetric power relations and to challenge systems and mechanisms of inequity and injustice in hope of dismantling oppression Theoretical approaches: critical, feminist, cultural humility, anti-racist, postcolonial, etc… What else? 44

45. Reflect on ethnocentrism and cultural humility 3. Avoiding ethnocentrism means embracing multiple cultural perspectives shift between diverse perspectives Recognizes ethnocentric standards and ideas HOW? Employ a team who can “translate” research from multiple cultural contexts 45

46. Valuing is culturally embedded Culture is central to the research process worldview, values and norms affect the uses of, reactions to, and legitimacy of, any research multicultural validity - defining social problems norms will play out in the context of research instruments and protocols. 46

47. Decolonize and Indigenize Culturally and ethnically diverse communities have contributions to make in redefining the research field standards, guidelines, methods and paradigms of the research field need to be rethought, and underserved and marginalized culturally diverse groups have an important role to play in this process 47