Dr. Jesús Sánchez Center for Research for Substance Use and HIV/AIDS

1. Getting Grounded: Developing a Community Based Participatory Research Partnership: The Hispanic Migrant Worker HIV Prevention Program (HMW-HIVP) Dr. JesúsSánchez Center for Research for Substance Use and HIV/AIDS Research on Latinos in the United States (C-SALUD) Florida International University

2. HIV Impact on HMWs • The HIV/AIDS epidemic represents a growing and persistent health threat to racial/ethnic minorities in the United States. • Hispanics, who comprise the majority of migrant workers, are disproportionately affected by HIV/AIDS as they represent 15% of the population and 17% of new HIV infection cases, a rate 2.5 times that of non-Hispanic Whites. • The HIV/AIDS epidemic among Hispanics is likely to escalate dramatically by 2050 when nearly 1 out of 3 Americans will be of Hispanic descent.

3. HIV Impact on HMWs Research has specifically linked migration/mobility to increased HIV incidence and vulnerability. • Migrant populations have a greater risk for poor health in general and HIV infection in particular. • Migrants often foster intolerance and hostility by the host community. • Even if health providers were prepared to assist migrant populations, they would likely encounter great difficulties in reaching out to them. • Available studies on HIV transmission and prevention among HMWs highlight the role played by risk factors such as inadequate or incorrect HIV transmission knowledge, limited access to HIV risk reduction information, unprotected sexual practices, and immediate survival problems.

4. HIV Impact on HMWs • Despite the fact that HIV/AIDS disproportionately impacts migrant communities, limited research has been conducted among HMWs and little is known about HIV prevalence and associated risk factors in this community. • The Hispanic Migrant Worker HIV Prevention Program (Project Salud) represents an attempt to reduce the risk of HIV infection among the Hispanic migrant community in South Florida.

5. HMWs in South Florida • The bulk of the HMW community in South Florida is located in Homestead. • Homestead is part of a predominantly rural area in the South of Miami-Dade County, Florida. • Official census data indicate that most of the population in Homestead (51.8%) is Hispanic/Latino, more than one-third (36%) is foreign born, and a majority (57.3%) speaks a language other than English at home (U.S. Census Bureau, 2006). • Agriculture and nursery constitute an important business in the Homestead area allowing for access to seasonal farm work.

6. CBPR as an alternative to traditional research Traditional research has demonstrated a limited capacity to impact underserved minority communities: • It has failed to solve complex health disparities • Community distrust • No tangible effect on communities • Lack of commitment • The helicopter effect

7. CBPR as an alternative to traditional research • CBPR offers an alternative to traditional research. “A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change...” (Community Health Scholars Program)

8. Barriers to a true CBPR partnership • Project Salud was conceived as an implementation of the CBPR model. • However, despite interest among community members and organizations, Dr. Sanchez concluded that both researchers and the community were not ready to engage in a true CBPR partnership: • Original timetable • Institutional barriers • Need to develop trust • Lack of knowledge and skills to immediately understand and participate in the research process

9. Barriers to a true CBPR partnership • For our partnership with the Latino migrant community to be a successful one, we understood that this knowledge gap had to be addressed and that it would require an extended period of time. • As Andrews and colleagues recently pointed out about their own experience developing a partnership in the community, "participants in our study who had formal training in CBPR (i.e. coursework, seminars, mentored experiences) had a better appreciation for the CBPR principles and were more likely to sustain partnerships over time" (Andrews et al., 2010).

10. Barriers to a true CBPR partnership • Consequently, despite its commitment to CBPR, Project Salud has not always followed some of the principles of a community based participatory research model. • Nevertheless, community partners have played a crucial role in some aspects of the study such as data collection.

11. Addressing the need for community capacity • As Project Salud was being conducted within the parameters and timeline originally established by its funding agency, we initiated a plan to address the issue of creating community capacity as a key building block in the development of our partnership with the Hispanic migrant community. • We requested and received additional funding from NIMHD via an Administrative Supplement.

12. Addressing the need for community capacity • Upon receiving this additional support, we started developing the Hispanic Migrant Worker HIV Prevention Program (HMW-HIVP). • LMV-HIVP is a CBPR research education program with the goal of building the knowledge and skills needed at the community level to develop and sustain an effective CBPR partnership to support HIV/AIDS research and prevention in the Latino migrant community.

13. HMW-HIVP The HMW-HIVP has three main objectives: • 1) Develop the HMW-HIVP training curriculum and create a training manual based on it. • 2) Implement the training curriculum to educate community members on various fundamental aspects of HIV research and prevention including community outreach and education, data collection, and findings dissemination. • 3) Provide the community with a permanent research infrastructure.

14. HMW-HIVP: Objective 1 • Having established these objectives, our first priority was to create a training curriculum that would provide the Latino migrant community with the knowledge and skills to address the issue of HIV research and prevention in their community from a CBPR standpoint. • The curriculum includes six units: CBPR Principles, Research Ethics, HIV/AIDS and its impact on the Latino community in the U.S., Quantitative Methodology, and Qualitative Methodology, and Oral Health. • Each unit contains learning objectives, in-depth content information about the topic(s) being presented, examples and interactive exercises that are designed to trigger discussion and to help better understand the concepts being presented, and suggested references and resources.

15. HMW-HIVP: Objective 2 • Prior to implementing the training curriculum, we hired two members from the community to be trained on the training curriculum, assist with the development of the training manual, and support training efforts at the community level.

16. HMW-HIVP: Objective 2 • The ongoing implementation of the training curriculum consists of a workshop that includes seven evening training sessions. • The entire workshop takes place over the course of two weeks and training participants receive $400 for their participation. • The first six sessions of the training workshop are devoted to each of the six units on the curriculum while session seven is a wrap-up session.

17. HMW-HIVP: Objective 2 • Although community participants are welcome to offer their feedback throughout the entire 7-day workshop, we conduct a more formal evaluation at the end of session seven. • We used participants’ comments and the formal evaluation to update and improve the manual so each new cohort of community participants will benefit from these improvements. • At the conclusion of the program, we will conduct a series of ethnographic interviews to assess the extent to which community members participating in the HMW-HIVP find the program to be effective in providing them with the knowledge and skills to meaningfully engage in HIV prevention efforts in the community.

18. HMW-HIVP: Objective 2 • While the training workshop addresses the primary objective of creating community capacity and fostering our partnership with the Latino migrant community, another important outcome needs to be considered. • Following a long standing tradition of training community members in underserved communities and employing them as lay health advisors (LHAs), we intend to engage some of the HMW-HIVP participants in future studies to disseminate the knowledge and skills they are receiving as part of their training to promote health, prevent disease, and reduce health disparities in the Hispanic migrant community. • As members of the community, training participants possess an intimate understanding of community social networks, communicate in a similar language, and recognize and incorporate cultural elements to promote health and health outcomes within their community.

19. HMW-HIVP: Objective 3 • The third objective of the HMW-HIVP was to provide the community with a permanent research facility. • In a combined effort between Project Salud and the Farmworkers Association of Florida, we have created a permanent research environment through the creation of a research facility at the offices of the Farmworkers Association of Florida (FWAF) in Homestead. • This office has been furnished with brand new computer equipment, printers, software, office supplies and, in general, everything that is needed for the day-to-day operation of a research facility, including technical assistance by C-SALUD staff. • This new research facility is currently housing the ongoing HMW-HIVP training workshops.

20. Conclusions • To establish and sustain the type of partnership necessary to successfully conduct CBPR efforts and accomplish the ultimate goal of achieving real change in the community, relationships between academia and communities have to develop at their own pace, and have to extend beyond single research projects and funding cycles. • The experience of Project Salud suggests that, despite many challenges, these type of partnerships can be fostered and that CBPR is a viable and sustainable alternative approach to conventional research. • We recently submitted a new grant proposal to extend and expand Project Salud’s HIV prevention efforts in the community.