Developing a Community Based Participatory Research Partnership

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Getting Grounded: Developing a Community
Based Participatory Research Partnership:
The Hispanic Migrant Worker HIV
Prevention Program (HMW-HIVP)
Dr. Jesús Sánchez
Center for Research for Substance Use and HIV/AIDS
Research on Latinos in the United States (C-SALUD)
Florida International University
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.
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.
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.
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.
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
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)
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:
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Original timetable
Institutional barriers
Need to develop trust
Lack of knowledge and skills to immediately
understand and participate in the research process
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 HMWHIVP training workshops.
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.
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