Community engagement 101 CBPR Overview.pptx

1. Introductions /Share past experience and future plans for CBPR research
2. Define and describe community-based participatory research (CBPR) for health in AI/AN communities
3. Explore the history of CBPR
4. Identify and describe theoretical approaches that align with AIAN CBPR.

1. Community Based Participatory Research Bonnie Duran Dr.PH Indigenous Wellness Research Institute, UW School of Public Health

2. Presentation Objectives Research and Community Based Participatory Research (CBPR) definitions and principles Examples of a CBPR processes with the Navajo Nation Discussion of Researcher Preparation for CBPR: Allies and Insiders CBPR Model 2/8/18 B. Duran 2

3. Research Definition Careful and persistent organized/orderly inspection or investigation into a subject in order to discover or revise facts, theories, applications. Subject: ________________ Investigation: _______________ Applications :_________________

4. CBPR Definitions “ 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 2/8/18 B. Duran 4

5. Participation in CBPR Builds capacity and reduces dependency on “ professional outsiders ” Ensures cultural and local competence Facilitates sustainability Enhances fit and productivity of programs Addressed concerns of manipulation 2/8/18 B. Duran 5 Jewkes & Murcott, 1998, Rifkin, Muller & Bichmann, 1988, Cooke & Kothari, 2001

6. CBPR placed vs. participatory-based Who chose the problem to be studied? How is the budget divided? 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? Source: Adapted from Reyes et al. www.med.umich.edu/.../Fall%202005/Lichtenstein_Community-Based%20Participatory%20Research%20Workshop.ppt

7. Identifying a problem Literature review/Theory Development Pulling the team together: support letters Research proposal Getting the funds Ethics review Making a plan Data collection Analyzing data Interpreting data Dissemination of data Advocacy: policy and services 2/8/18 B. Duran 7 Stages of Research

8. Principles for Tribes Don ’ t plan about us, without us Policies shall not bypass Tribal government review and approval prior to implementation Data shall not be published without prior consultation Data belongs to tribe 2/8/18 B. Duran 8 Turning Point Collaboration for a New Century of Public Health, Spring Forum 2001, NACCHO,W.K.K Kellogg, Robert Wood Johnson Foundations

9. 2/8/18 B. Duran 9 University Control Community Control CBPR Spectrum of CBPR Relationships Shared University/Community Control

10. 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”* 2/8/18 B. Duran 10 Israel BA, Eng E, Schulz AJ, et al, eds. Methods in Community-Based Participatory Research for Health. San Francisco, Calif: Jossey-Bass; 2005 NCAIPRC Tribal Leaders Research Guide 2009 “Research that involves the community in planning and conducting the study. “

11. Values of CBPR Community Knowledge is valued and valid Research is not culturally neutral Responsible stewardship / management includes understanding data and research Community leaders must exercise authority in directing research and managing data Research must benefit community members

12. Values Stewardship: being responsible for the needs of a community To protect from harm To enhance well-being Culture Matters:

13. Participation in CBPR Builds capacity and reduces dependency on “professional outsiders” Ensures cultural and local competence Facilitates sustainability Enhances fit and productivity of programs Addressed concerns of manipulation 2/8/18 B. Duran 13 Jewkes & Murcott, 1998, Rifkin, Muller & Bichmann, 1988, Cooke & Kothari, 2001

14. CBPR placed vs. participatory-based Who chose the problem to be studied? How is the budget divided? 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? Source: Adapted from Reyes et al. www.med.umich.edu/.../Fall%202005/Lichtenstein_Community-Based%20Participatory%20Research%20Workshop.ppt

15. Identifying a problem Literature review/ Theory Development Pulling the team together: support letters Research proposal Getting the funds Ethics review Making a plan Data collection Analyzing data Interpreting data Dissemination of data Advocacy: policy and services 2/8/18 B. Duran 15 Stages of Research

16. 2/8/18 B. Duran 16 How can you prepare ? The California Endowment Rodney Hopson, Ph.D. Adapted from:

17. 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? 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.

18. 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, postcolonial, etc… What else?

19. 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

20. Valuing is culturally embedded Culture is central to the research process worldview, values and norms impact 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.

21. 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

22. Research for Change: Cross-Site Multicultural Community-Based Participatory Research Funding NIDA, OBSSR, NCRR 22

23. AIMS: Research for Chang Cross-Site 1. Describe the variability of CBPR across dimensions in the model to identify differences and commonalities across partnerships 2. Describe and assess the impact of governance on CBPR processes and outcomes across AI/AN and other communities of color.

24. AIMS: Research for Change Cross-Site 3. Examine the associations among group dynamic processes and three major CBPR outcomes: culturally-responsive and centered interventions; strengthened research infrastructure and other community capacities; and new health-enhancing policies and practices, under varying conditions and contexts. 4. Identify and disseminate best and promising practices, assessment tools, and future research needs

25. Partner Roles and Responsibilities NCAIPRC to convene CoP, Executive Council and SCAC to ensure development of principles for participatory decision-making, shared values, and a strengthened voice for all partners. UW responsible for development, implementation, and analysis of the survey (407 + sites ?) . Working with NCAI PRC and UNM in interpretation of data, in developing site reports, and development of dissemination strategies. UNM responsible for case studies, data collection and analysis from case studies. Working with UW and NCAIPRC in integration of case study with survey results for dissemination strategies.

26. Tribal Colleges and University Alcohol and Drug Problems and Solutions Study

27. Study Overview AIMS Establish partnership and board (CBPR) Compile and summarize literature Needs and capacity assessment Qualitative review of culture-centered and evidence based interventions Develop effective outreach and screening procedures Benefits to TCU Individualized reports Results of research for SAMHSA/HRSA grants and advocacy Work with TCU students Identify TCU “ best practices ” Data for AIAN TCU thesis, dissertations

28. UW Team Bonnie Duran, Leo Egashira Maya Magarati Myra Parker Elana Mainer Ramona Beltran

29. Decolonizing Strategies: Potential Approaches to Support Epistemic Diversity In the Practice World The California Endowment Rodney Hopson, Ph.D. Adapted from:

30. Base Interventions on Culture Story telling Sweat Lodge Talking circle Vision quest Wiping of tears Drumming Smudging Traditional Healers Herbal remedies Traditional activities 31

31. Reflect on your Social Location The social location of the student/researcher matters (intersectionality) Gender Race Class Ethnicity Education Privilege/target Sexual orientation Etc… What else? 32 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.

32. 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: Indigenist, Queer, critical, feminist, cultural humility, anti-racist, postcolonial, etc… What else? 33

33. 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 34

34. Valuing is culturally embedded Culture is central to the research process worldview, values and norms impact 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. 35

35. 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 36

36. A Role of Academic Researchers The role of the intellectual, according to Delueze, is not to awake consciousness but to weaken the power of hegemonic discourse and to create the space for competing discourses to be formulated and dispersed.