Volume 8: No. 2, March 2011
Karen Yeary, PhD; Eric Flowers, MPH; Gemessia Ford, MPH; Desiree
Burroughs; Jackie Burton; Delores Woods; Chara Stewart, MPH; Paulette Mehta,
MD; Paul Greene, PhD; Ronda Henry-Tillman, MD
Suggested citation for this article: Yeary K,
Flowers E, Ford G, Burroughs D, Burton J, Woods D, et al. Development of a
community-based participatory colorectal cancer screening intervention to
address disparities, Arkansas, 2008-2009. Prev Chronic Dis 2011;8(2):A47.
http://www.cdc.gov/pcd/issues/2011/mar/10_0103.htm. Accessed [date].
PEER REVIEWED
Abstract
Background
The death rate from colorectal cancer is high and affects poor and medically
underserved populations disproportionately. In the United States, health
disparities are particularly acute in the Lower Mississippi River Delta region.
Because many in the region have limited access to basic health care resources,
they are not screened for cancer, even though screening is one of the most
effective strategies to prevent colorectal cancer. Community-based participatory
research is a promising approach to prevent colorectal cancer in this
population.
Community Context
The Empowering Communities for Life program was implemented in 2 underserved
counties in the Arkansas Lower Mississippi River Delta. The program arose from a
9-year partnership between the University of Arkansas for Medical Sciences and 9
cancer councils across Arkansas.
Methods
Empowering Communities for Life is a community-based participatory intervention
designed to increase colorectal cancer screening in rural, underserved
communities through fecal occult blood testing. Community and academic partners
collaborated to develop research infrastructure, intervention materials and
methods, and the assessment instrument.
Outcome
Project outcomes were strengthened community-academic partnerships,
certification of community partners in conducting human subjects research,
development of a randomized controlled design to test the intervention’s
efficacy, an interactive PowerPoint presentation, an informational pamphlet, the
certification of 6 lay health advisors and 22 role models to provide the
intervention, and an assessment tool using an audience response system.
Interpretation
Lessons learned in working collaboratively with diverse groups include the
importance of meeting face to face and listening.
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Background
The death rate from colorectal cancer in the United States is high
(16.7/100,000) (1) and affects medically underserved populations
disproportionately (2,3). Health disparities are particularly severe in the
Lower Mississippi River Delta region. The region is predominately rural and has
limited numbers of health care providers and facilities, low rates of health
insurance coverage, low levels of educational attainment, and high rates of
poverty (4,5). Because of this limited access to basic health care resources,
disease management is given priority over preventive health care (4). Thus, many
in the region are not screened for cancer, even though screening is one of the
most effective strategies for preventing colorectal cancer (6).
By focusing on collaboration with communities disproportionately affected by
disease to improve health, community-based participatory research (CBPR) is a
promising approach to prevent colorectal cancer in underserved populations (7).
Several CBPR studies have successfully increased screening for breast and
cervical cancer (7); however, few have targeted colorectal cancer in underserved
populations (7,8). The few colorectal cancer screening interventions primarily
have focused on client reminders (9), which exclude people who are unable to
access the health care system.
Empowering Communities for Life (ECL) uses a CBPR approach to increase
colorectal cancer screening rates among rural, underserved populations in 2
Lower Mississippi River Delta counties by increasing the use of fecal occult
blood testing (FOBT), a low-cost way to screen for colorectal cancer. The goal
of the CBPR process used in ECL was to build infrastructure to conduct
translational research, design materials and methods salient to the community,
recruit and train lay health advisors and role models, and develop an assessment
instrument. In this article, we describe the development of the CBPR
partnership, development of ECL, and lessons learned by using a CBPR approach.
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Community Context
The community context for ECL is 2 Arkansas counties in the Lower Mississippi
River Delta region, Mississippi and St. Francis. Both counties are designated as
medically underserved and health professional shortage areas, and access to
health care resources is further complicated by the counties’ and state’s
decentralized and limited rural transportation system (10).
Mississippi County is a predominately agricultural community (11);
approximately 35% of the county’s total population is considered rural (11). The
population of Mississippi County is 46,741; of this number 36% are minorities
(some race other than white), and a high percentage is low-income (27% below
poverty level vs 14% nationally) who either have no health insurance or are
underinsured (12-14). Approximately 26% of residents have less than a high
school education (vs 16% nationally) (13). Representing the county is
Mississippi County Arkansas Economic Opportunity Commission, Inc (MCAEOC), a
nonprofit organization committed to enabling low-income residents of Mississippi
County to become self-sufficient.
Approximately half of the population in St. Francis County is rural (15).
Also a predominately agricultural community (15,16), St. Francis County has a
population of 26,783; of this number 54% are minorities, and a high proportion
are low-income (32% below poverty level vs 14% nationally) who either have no
health insurance or are underinsured (12,14,17). Approximately 26% of residents
have less than a high school education (vs 16% nationally) (17). Representing
the county is East Arkansas Enterprise Community (EAEC), a nonprofit rural
development program that assists communities in St. Francis County through
financial and technical support.
Both Mississippi and St. Francis counties have striking racial disparities in
colorectal cancer deaths; African Americans in Mississippi (43.7 per 100,000
population per year from 1997 to 2007) and St. Francis counties (37.3 per
100,000) have higher age-adjusted colorectal cancer death rates than do whites
in Mississippi (22.1 per 100,000) and St. Francis counties (26.1 per 100,000)
(18).
ECL arose from a 9-year partnership starting in 2001 between the University
of Arkansas for Medical Sciences (UAMS) and 9 community-based coalitions
organized as regional cancer councils representing 10 of Arkansas’s 75 counties.
Cancer councils, originally funded by the Centers for Disease Control, identify
cancer-related problems in their local communities, establish local cancer
control priorities, identify and fill gaps in local service and delivery,
improve communication with local health care providers, and develop intervention
strategies that fit their community’s unique needs. UAMS collaborates with the
cancer councils through a participatory approach in assessing the assets and
needs of the coalition and in developing a research agenda responsive to
community interest and priorities.
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Methods
Building the ECL partnership
In 2006, the partnership received funding from the National Cancer Institute
for pilot research projects to strengthen and broaden its networks across the
state. The St. Francis and Mississippi cancer councils implemented pilots
focused on colorectal cancer, which was the issue of interest identified by both
councils. The lead organization in the St. Francis County cancer council was
EAEC. The lead organization in the Mississippi County cancer council was MCAEOC.
Academic partners met regularly with community partners of awarded cancer
councils to implement the pilots. Data from the pilots resulted in the
development and funding of ECL.
ECL is a CBPR intervention designed to increase colorectal cancer screening
rates via FOBT among adults aged 50 years or older who do not adhere to
screening guidelines. The intervention is based on social cognitive and
diffusion theories. The objectives of the partnership were to use a CBPR
approach to build infrastructure to conduct research, design materials and
methods salient to the community, recruit and train lay health advisors and role
models, and develop an assessment instrument. The goal is to test the efficacy
of ECL in a 5-year randomized controlled trial with 750 participants who do not
meet colorectal cancer screening guidelines. The study is approved by the UAMS
institutional review board.
Each partner had negotiated subcontracts, which gave the community visible
power and equity and set the stage for shared decision making (7). To create a
strong sense of ownership, partners named the study Empowering Communities for
Life. Community partners say they hope to empower members of the community
through education about the benefits of screening to prevent colorectal cancer.
The partnership represents the target community in several ways.
Representatives from MCAEOC are Mississippi County natives and consist of 2
African American women and 1 white man. Representatives of EAEC are St. Francis
County natives and consist of 2 African American women. University partners
include 5 African American women, one of whom is a Mississippi County native, 2
African American men, 3 white men, and 1 Asian woman, for a total of 11 academic
partners. Beginning in August 2008, the diverse partnership worked together for
9 months to develop ECL (Figure).
Figure. Timetable of major milestones, Empowering
Communities for Life program, Mississippi and St. Francis counties, Arkansas.
Abbreviation: IRB, institutional review board. [A text
description of this figure is also available.]
Building research infrastructure
In initial ECL meetings, the community partners were less vocal than academic
partners in discussions of study design and intervention development. When
asked, the community partners said that they were unfamiliar with many of the
research terms used. To facilitate equitable collaboration, an academic partner
used previously developed materials in her work with Lower Mississippi River
Delta communities to develop a 4-hour training in basic research for community
partners. Academic partners also developed an 8-hour training session in
certification to perform research with human subjects to supplement a
computerized UAMS training program, which used technical terms unfamiliar to the
community partners. All community partners participated in the training.
Developing ECL materials and methods
Intervention materials were developed for 2 intervention arms and a control
arm. The lay health advisor arm consists of a PowerPoint presentation about
colorectal cancer delivered by a lay health advisor, a corresponding brochure
developed with community partners that reinforces the main points of the
presentation, and a community member’s (role model’s) 3- to 5-minute testimony
about his or her experience with colorectal cancer screening. The health
professional arm consists of a PowerPoint presentation about colorectal cancer
delivered by a health professional and a corresponding brochure from the
American Cancer Society. The control arm consists of a presentation about
cardiovascular disease delivered by a health professional and a corresponding
brochure from the American Heart Association. Recipients of the intervention
will be adults in Mississippi and St. Francis counties aged 50 years or older
who are not adherent to colorectal cancer screening guidelines.
To facilitate collaborative development of intervention components, academic
partners presented initial drafts of PowerPoint presentations and brochures.
Community partners reviewed the presentations and talked about the power of
storytelling in the community. Academic partners described the Witness Project
(19), a successful cancer screening program that uses storytelling, as a
potential model for the storytelling component. Thus, the partnership decided to
have a community member tell his or her colorectal cancer screening story in the
lay health advisor arm to provide a model of screening behavior and to give
participants a personal perspective on the screening experience. Community
partners spoke of the importance of engaging the audience so that the
presentation would be interesting to them; thus, the partnership decided to
include checklists in the brochures for the lay health advisor arm for readers
to indicate their own risk for colorectal cancer and symptoms of colorectal
cancer they may have. The partnership also decided that the latter half of the
presentation in the lay health advisor arm should consist of an interactive
demonstration on how to use the FOBT.
To refine the intervention, community partners practiced delivering the
presentation of the lay health advisor arm to all partners, whereas academic
partners delivered the PowerPoint presentations of the health professional and
control arms to all partners. The academic partners ensured that community
partners delivered the information accurately, whereas community partners
ensured that the presentations were delivered in a way that would be interesting
to the audience.
All partners subsequently made revisions to the
intervention and control arms. Revisions included the addition of more
discussion questions, graphics, and sound effects to the lay health advisor arm
presentation. Aspects of each presentation were also changed to enhance clarity.
For example, the partnership decided to use peanut butter in the FOBT
interactive demonstration to familiarize participants with stool handling.
The PowerPoint slides and brochure were fine-tuned iteratively; several
rounds of revisions and presentations increased the clarity and accuracy of the
information.
Selecting and training lay health advisors and role models
The partnership chose employees from EAEC and MCAEOC to serve as lay health
advisors because of their 1) recognition in the community as providers of
trusted advice and support, 2) experience as lay health advisors on previous
cancer council projects, 3) ability to be discreet with participants’
information, 4) involvement in the project since its inception, 5) interest in
project goals and activities, and 6) available time to devote to the project.
Community partners developed a strategy to recruit role models who would
present their personal experience with colorectal cancer screening. Role models
had to reside in either Mississippi County or St. Francis County, have received
some type of colorectal cancer screening in the past year, and provide informed
consent. Community partners targeted people whom others naturally turn to for
advice, emotional support, and tangible aid, and who were known in the community
as being discreet.
Academic partners developed a 20-hour lay health advisor training (19). The
training was led by an academic partner, and initial topics included an overview
of the project, the role of the lay health advisors in the project, and the
importance of confidentiality. The intervention’s presentation components were
then reviewed in detail. Each component had corresponding PowerPoint slides,
presentation notes, and flash cards with questions and answers. The final part
of the training included mock presentations by each lay health advisor at
community sites. Community and academic partners critiqued the presenter to
improve the presentation. Certification to be a lay health advisor required
completion of training and passing the final exam with a score of 80% or higher.
To maintain the level of competence achieved through the training, lay health
advisors met with one another and with academic partners to practice the
presentation.
Role models underwent 5 hours of training, which was developed by academic
partners and refined by community partners. The training began with an overview
of the project, the intervention presentation, the job of the role model, and
the importance of confidentiality. A lay health advisor delivered the
intervention presentation, which gave a basic overview of colorectal cancer and
the importance of screening. Role models were divided into groups, which were
co-facilitated by academic and community partners. Each role model was asked to
tell his or her story based on a given outline. Feedback was given to each role
model. To maintain the level of competence achieved through the training, role
models met with community and academic partners to practice the presentation.
Preparing the assessment instrument
The assessment instrument was created to assess participants’ self-reported
medical history and preventive health services, knowledge of screening
recommendations, and attitudes regarding preventive behaviors. Academic partners
presented a list of demographic, behavioral, and psychosocial factors associated
with FOBT use for the partnership to decide which factors to include in the
assessment. For each factor chosen, the partnership decided which questions to
include by using previous questionnaires (20). Community partners said the
survey would need to be engaging for participants to give honest answers. The
partnership decided to use an audience response system (OptionPower 3.2, Option
Technologies Interactive, Orlando, Florida), which presents assessment questions
in PowerPoint that participants can answer using a keypad. Academic partners
drafted the assessment and trained lay health advisors to use the audience
response system; during a series of meetings at which lay health advisors
practiced administering the assessment, community and academic partners made
revisions to maximize readability and clarity.
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Outcome
Development of ECL helped strengthen the collaborative relationship between
the partners
(Table). An outcome of ECL
was the recruitment of 11 academic and 5 community partners in a collaborative
relationship to develop a CBPR colorectal screening intervention. To develop a
stronger research infrastructure within the partnership, trainings were
conducted to produce human subjects certification and greater engagement among
all 16 partners. Training in research methods resulted in the development of a
randomized controlled trial design to test the strategies to promote colorectal
screening through ECL, for which the return rate for the FOBT will be the
primary outcome measure.
Another outcome is the production of theory-based interactive PowerPoint
presentations for all intervention arms of ECL that cover the importance of
colorectal cancer and cardiovascular disease screenings, production of a
brochure for the lay health advisor intervention, and the incorporation of
role models to describe their personal experience with colorectal cancer
screening.
To implement ECL, 6 lay health advisors and 23 role models were recruited.
All lay health advisors and 22 role models were certified.
The partnership also produced an assessment instrument using an audience
response system that evaluates patient experiences in the health care system,
colorectal cancer screening behavior and knowledge, cardiovascular disease
screening behavior and knowledge, risk factors for cancer and cardiovascular
disease, and opinions about cancer and cardiovascular disease prevention.
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Interpretation
Given the distance between community and academic partners (191 miles between
UAMS and MCAEOC; 95 miles between UAMS and EAEC), the partnership initially
decided to alternate regular meetings with conference calls. However, during the
conference calls, community partners were less vocal than academic partners.
Given that this was the first large-scale research project both communities had
been a part of, there was hesitancy in sharing ideas. Some community partners
said that working with the university felt like the “small town” meeting the
“big city,” which made them uncomfortable contributing to discussions. Thus,
community and academic partners decided to meet face to face until university
partners developed skills to communicate in a community-friendly way and a level
of comfort and familiarity between the partners was achieved, which occurred
approximately 6 months into the project. In face-to-face meetings, academic
partners discovered that they were able to read body language to see whether
their questions were being understood, which allowed for adjustments in how
questions were worded. Face-to-face meetings also included visual aids to help
community partners understand the research. Dialogue was further facilitated by
open discussions of community culture and role-playing activities.
Community partners revealed that the university partners were seen as
authority figures who know what is best and should not be questioned. Because of
this perception, community partners spoke up only when they felt strongly about
project decisions; voicing their opinions at all was the equivalent of shouting
them. With this understanding, academic partners learned to listen carefully to
community partners and to give great weight to every comment. Academic partners
also emphasized the importance of community partners’ expertise, whereas
community partners learned to view academic partners more realistically.
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Conclusion
To our knowledge, only a few studies have developed a colorectal cancer
prevention intervention for an at-risk population using a CBPR approach
(8,21,22). ECL is a theory-grounded intervention that builds on community
resources to address cancer disparities by increasing colorectal cancer
screening in an underserved population. Community-based participatory strategies
incorporating sound research methods and health behavior theory have guided the
development and implementation of this study. A product of a 9-year partnership,
ECL may be a useful model for community-based interventions to increase
colorectal cancer screening among rural, underserved groups, and a step toward
eliminating disparities in health.
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Acknowledgments
We thank EAEC, MCAEOC, Inc, Priscilla Johnson, Janell French, Ron Rasdon,
Danny Carter, Shannon Langhorn, Brandon Watson, and Michael Preston.
Financial support was provided by National Institutes of Health grant no.
1R24MD002805-01.
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Author Information
Corresponding Author: Karen Yeary, PhD, University of Arkansas for Medical
Sciences, Department of Health Behavior and Health Education, 4301 West Markham
St, No. 820, Little Rock, AR 72205-7199. Telephone: 501-526-6720. E-mail:
khk@uams.edu.
Author Affiliations: Eric Flowers, Gemessia Ford, Desiree Burroughs, Chara
Stewart, Paulette Mehta, Paul Greene, Ronda Henry-Tillman, University of
Arkansas for Medical Sciences, Little Rock, Arkansas; Jackie Burton, Mississippi
County Arkansas Economic Opportunity Commission, Inc, Blytheville, Arkansas;
Delores Woods, East Arkansas Enterprise Community, St. Francis, Arkansas.
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