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

Developing a Community Based
Participatory Research Agenda
Flavio Francisco Marsiglia, Ph.D.
C-SALUD BI-ANNUAL CONFERENCE
Florida International University
April 26-27, 2011
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.
Defining the Approach
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)
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 MexicanAmerican 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)
Where Do We Start?
Multiple and Overlapping Lenses
Source: Koh, 2010
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).
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.
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.
Use-inspired Intervention Research
Research
Project
Community
Need
Community
Solution
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
CBPR is Based on Collaboration
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).
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.
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)
Health Equity Action Research
& Ethnicity
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.
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).
Action Model
Social Determinants of Health
Interventions
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Outcomes
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Policies
Programs
Prevention Interventions
Health Literacy
Behavioral outcomes
Specific risk factors
Health-related quality of life
Health equity
Assessment, evaluation,
and dissemination
(Adapted from Healthy People 2020)
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).
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
Health Disparities Research Focus
`
Health Disparities
Populations
Ethnic, racial,
underserved,
poor and
immigrant
groups in the
US-Mexico
Border region
Influences
Sociocultural
determinants
of health:
fundamental
causes and
protective
factors
against
disease
Priority Health
Outcomes
Substance Use
HIV/AIDS
Mental Health
Obesity
Diabetes
Asthma
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
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).
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.)
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.
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)
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
Enculturation helps achieve balance between
educational advancement and cultural
preservation
Will feeling welcome in school improve functioning
in both the Native and non-Native worlds?
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
SIRC Organizational Relationships
Evaluation
& Partner Contracts
Developing a CBPR Agenda
 Community felt needs
 Epidemiological data
 State of knowledge
 Faculty/researchers expertise
 Funding sources priorities
 Feasibility
 Public health relevance
Thank you!
Please contact me at:
[email protected]
Please visit us at:
http://sirc.asu.edu
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.