Developing a Community Based Participatory Research Agenda Flavio Francisco Marsiglia, Ph.D.

1. Developing a Community Based Participatory Research Agenda Flavio Francisco Marsiglia, Ph.D. C-SALUD BI-ANNUAL CONFERENCE Florida International University April 26-27, 2011

2. Acknowledgments • SIRC is an Exploratory Center of Excellence funded by the National Institute on Minority Health and Health Disparities (NIMHD) of the National Institutes of Health (NIH), Awards: P20MD002316 & R01MD006110 • SIRC is partially funded by Arizona State University • SIRC’s Office of Evaluation and Partner Contracts is funded through grants and contracts awarded by or through its community partner organizations • SIRC disseminates its interventions with revenues generated through licenses, patents, fees and royalties.

3. Defining the Approach

4. Health Disparities • Racial/ethnic minority communities: • lack of access to care • unequal access to knowledge and health interventions • do not get proper and timely diagnosis. • Lower levels of access to health care are often linked with economic, geographic, linguistic, cultural, and health care financing issues. Source: OMH (2009)

8. Health Disparities & US Latinos/as • Latinas (77.4 per 1,000) are three times more likely than Whites (26.7) to become pregnant, and higher than Blacks (62.9). • Latinos are disproportionately impacted by obesity with Mexican-American adults (78.8%) and adolescents (44.1%) exhibiting the highest rates of overweight and obesity. • Latinos live in some of the most polluted and contaminated areas. • Asthma rates are higher among Puerto Ricans (18.4 percent) than any other ethnic group (non-Hispanics blacks 14.6% and non-Hispanic whites 8.2 %). • Latinos account for one-third of the population lacking health insurance. (CDC, 2011)

9. Where Do We Start?

10. Multiple and Overlapping Lenses Source: Koh, 2010

11. Social & Cultural Determinants of Health • Nonmedical factors play a fundamental role in the occurrence of illness and injury among individuals and disparities in health across populations and communities. • Family, social, and economic circumstances can have crucial influences on children's development, through many different and often complex pathways (Braveman, 2011). • 95% of children of immigrants are US born; ecodevelopmental influences place these children at greater risk than their parents. • There is a need to prevent the erosion of original protective factors (Vega & Srinney, 2011).

12. Culture & Health Outcomes Cultural processes—immigration, acculturation, ethnic identity—are vital to individuals’ integration into society, their sense of self and belonging, and their access to and utilization of health care. The inability to speak English or to understand mainstream American forms of interaction may cause stress, and this stress may translate into negative health outcomes through various pathways. The ability to speak one’s native language may translate to feelings of connectedness with one’s cultural group and thus serve as a source of strength and resilience in time of stress, leading to positive health outcomes.

13. A Culturally Grounded Approach Grounded in race/ethnicity, gender, sexual orientation, religion, social class, and ability status Facilitates a process of awareness about culture and its protective factors (la cultura cura) Recognizes intersectionality – individuals form complex multidimensional identities Aims at generating change in partnership with communities (CBPR) Aims at improving issues of equity, quality, and access to care from a social justice and distributive justice perspective.

14. Use-inspired Intervention Research

15. What is CBPR? CBPR is an orientation to conducting research It provides specific strategies to integrate the knowledge and expertise present in communities throughout the research process It makes research partnerships real and prevents paternalism and helicopter research

16. CBPR is Based on Collaboration

17. CBPR … • Begins with a research topic of importance to the community with the aim of combining knowledge and action for social change. • Is a collaborative process that equitably involves all partners in the research process and recognizes the unique strengths that each brings. • Is not a method per se but an orientation to research that applies a number of qualitative, quantitative and mixed methodologies. (Viswanathan et al., 2004).

18. Key Elements of CBPR • Co-learning and reciprocal transfer of expertise, by all research partners. • Shared decision-making power. • Mutual ownership of the processes and products of the research enterprise.

19. CBPR… • Builds on strengths and resources within the community. • Facilitates collaborative, equitable partnerships in all phases of the research. • Promotes co-learning and capacity building among all partners. • Integrates and achieves a balance between research and action for the mutual benefit of all partners. • Emphasizes the local relevance of public health problems and ecological perspectives that recognize the multiple determinants of health and disease. • Disseminates findings and knowledge gained to all partners and involves all partners in the dissemination process. (Israel et al., 2003)

20. Health Equity Action Research & Ethnicity

21. Science & Community Participation • When faced with a choice between community objectives and the satisfaction of intellectual curiosity, we should hold community objectives to be the higher good (Brown, 1997). • We need to seek a balance between research and action and questions of scientific quality of the research (Israel et al., 1998). • Our communities deserve the best available science.

22. Redefining Best Research Practices • The quality of the cooperative relationship and the forms of participation. • The quality of the research and its scientific standards. • The quality of the influence and impact of the research on the community (e.g., reduction and elimination of health disparities).

23. Action Model (Adapted from Healthy People 2020)

24. In Arizona • Latinos are 30% of the AZ population and there are more Latino children (43%) than White children (42%). The American Indian population grew by 16% in the last decade and they now represent close to 5% of the total Arizona population. • The Arizona Department of Health Services (AZDHS) assessed Latino’s health status as “worse than average” in 32 of 70 categories and American Indians in 48 of 70 categories (AZDHS, 2009). • African Americans, Latinos and American Indians lead HIV death rates. • All ethnic minorities live an average of 10 to 20 years less than white non-Hispanics. • American Indian and Latinos have the highest alcohol-related mortality rates in the state. (AZDHS, 2003; 2009; U.S. Census Bureau, 2011).

25. SIRC’s Mission Statement To generate use-inspired knowledge and interventions on social and cultural determinants of health in partnership with communities of the Southwest to prevent, reduce and eliminate health disparities

26. Health Disparities Research Focus ` Health Disparities Populations Influences Priority Health Outcomes Ethnic, racial, underserved, poor and immigrant groups in the US-Mexico Border region Sociocultural determinants of health: fundamental causes and protective factors against disease Substance Use HIV/AIDS Mental Health Obesity Diabetes Asthma

27. Research Aims • To identify cultural strengths and processes that produce healthy outcomes • To explore how ethnic minority cultural values and norms promote behaviors that protect health • To study whether and how ethnic/racial discrimination and acculturation stress compromise health • To develop and test culturally appropriate interventions to reduce and eventually eliminate health disparities among ethnic minority populations

28. Main Research Projects (1) • Families Preparing the Next Generation: Parent Education Intervention – supplement and complement to keepin’ it REAL, Mexican/ Mexican American youth & parents (NIH/NIHMD P20) • Living in Two Worlds: Substance Abuse Prevention for Urban American Indian Youth (NIH/NIHMD P20) • Urban American Indian Parenting Intervention: Develop and test parenting intervention to prevent Urban American Indian youth drug use and risky sexual behavior (NIH/NIMHD R01) Recently concluded hospital-based RCT: • Familias Sanas: An Inter-conception care intervention for Latina Mothers (funded by Medicare/Medicaid Services).

29. Second Generation Pilots • HIV/AIDS & mental health (Chinese & Mexican American youth) • Asthma (Mexican Am. families) • Obesity (Mexican Am. children) • Sexual behavior and violence (Youth in the justice system, multi-ethnic, predominantly African Am.)

30. Acculturation • Culture can be a source of resilience —family-centeredness in the Latino community supports healthy behaviors. • Changes in culture, as through acculturation, and acculturation stress entail some risk for substance abuse. • Acculturation that occurs slowly and promotes bi-cultural orientations protects adolescents by sheltering them from the developmentally-driven expansion of their social networks, a process that puts them at greater risk for drug use and other risky behaviors.

31. Perceived Ethnic Discrimination Mexican heritage 5th grade children perceive high levels of ethnic discrimination, which predicts: greater recent and lifetime use of alcohol, cigarettes and marijuana and attitudinal risk factors for later substance use– intentions to use substances, pro-drug norms, positive substance use expectancies, and peer approval of substance use. (Kulis, Marsiglia, & Nieri, 2009)

32. Urban American Indian Youth • Over 60% of American Indians now live in cities • Loss of ethnic culture as a risk factor in Native youth drug use • Enculturation as a protective factor • Sense of belonging as locus for negotiating in bicultural world • Schools as key environments in enculturation • Enculturationhelps achieve balance between educational advancement and cultural preservation • Will feeling welcome in school improve functioning in both the Native and non-Native worlds?

33. Sustaining CBPR • CAB membership, governance, subcommittees • Joint strategic planning • CAB chair a member of the Executive Council • Additional American Indian Steering Group • Ongoing needs assessment and translational research • Annual research conference and community leadership awards • Office of Evaluation and Partner Contracts • Community Research Fellows

34. SIRC Organizational Relationships Evaluation & Partner Contracts

35. Developing a CBPR Agenda • Community felt needs • Epidemiological data • State of knowledge • Faculty/researchers expertise • Funding sources priorities • Feasibility • Public health relevance

36. Thank you! Please contact me at: marsiglia@asu.edu Please visit us at: http://sirc.asu.edu

37. Works Cited Braveman, P. A., Egerter, S. A., Woolf, S. H., & marks, J. S. (2011). When do we know enogh to recommend action on the social determinants of health? American Journal of Preventive Medicine, 40, S58-S66. Brown, L. (1997) Ten commandments of community-based research. In Minkler, M. (ed.), Community Organizing and Community Building for Health. Rutgers University Press, New Brunswick. Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J. and Guzman, J. R. (2003) Critical issues in developing and following community-based participatory research principles. In Minkler, M. and Wallerstein, N. (eds), Community-Based Participatory Research for Health. Jossey-Bass, San Francisco, pp. 56–73. Koh, H. K., et al. (2010). Translating research evidence into practice to reduce health disparities: A social determinants approach. American Journal of Public Health, 100, S72-S80. Kulis, S., Marsiglia, F.F., & Nieri, T. (2009). Perceived discrimination versus acculturation stress: Influences on substance use among Latino youth in the Southwest. Journal of Health and Social Behavior, 50, 443-459. PMCID: PMC2821707 Viswanathan, M., Ammerman, A., Eng, E., Gartlehner, G., Lohr, K. N., Griffith, D. et al. (2004) Community based participatory research: Assessing the evidence. Summary, evidence report/technology assessment: Number 99. AHRQ Publication Number 04-E022-1. Agency for Healthcare Research and Quality, Rockville, MD.