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ICR Abstracts: 4.5
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The Institute for Community Research
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May 24, 2006 08:48 PDT
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[Editor's note: The following articles have been selected because they
collectively deal with a variety of issues related to community-based
research (e.g., collaboration, ethics, methods) and they cover various
disciplines. If you have suggestions for articles/publications for
future postings, or other feedback in the
presentation, simply reply to this email. Thanks for joining!]
ICR Abstracts (4.5: May 24, 2006)
1. Blumenthal, D. S., Fort, J. G., Ahmed, N. U., Semenya, K. A.,
Schreiber, G. B., Perry, S., et al. (2005). Impact of a two-city
community cancer prevention intervention on African Americans. _Journal
of the National Medical Association_, 97(11), 1179-1488.
We report the first multisite, multicomponent community intervention
trial to focus on cancer prevention in African Americans. The project
explored the potential of historically black medical schools to deliver
health information to their local communities and used a community-based
participatory research approach. The intervention consisted of
culturally sensitive messages at appropriate educational levels
delivered over an 18-month period and tested in predominantly black
census tracts in Nashville, TN and Atlanta, GA. Chattanooga, TN and
Decatur, GA served as comparison cities. Results were evaluated by pre-
and postintervention random-digit dial telephone surveys. The
intervention cities showed an increase in reported contact with or
knowledge of the project. There was little or no effect on knowledge or
attitudes in the intervention cities. Compared to Chattanooga, Nashville
showed an increase in percentage of women receiving Pap smears. Compared
to Decatur, Atlanta showed an increase in percentage of age-appropriate
populations receiving digital rectal exams, colorectal cancer screenings
and mammograms. The results of this community intervention trial
demonstrated modest success and are encouraging for future efforts of
longer duration.
2. Boser, S. (2006). Ethics and power in community-campus partnerships
for research. _Action Research_, 4(1), 9-21.
The past 20 years have seen a strong emergence of participatory
approaches in social research. Such efforts typically include the
researched in defining the questions, in data collection and analysis,
and in interpreting and taking action based on the research findings.
The objective is co-generating knowledge and, potentially, sharing
decision-making based on that knowledge. This movement toward
participatory research brings new sets of social relations for research
and, as such, presents a new set of ethical challenges. The current
framework for understanding the ethical issues involved in research is
predicated on post-positivist epistemological assumptions of a distanced
objectivist research stance, and thus is ill-suited for examining the
ethics of participatory research. This article shall address this gap,
outlining the potential ethical implications and presenting a framework
for considering the ethical questions involved in participatory research
partnerships.
3. Brown, E. R., Holtby, S., Zahnd, E., & Abbott, G. B. (2005).
Community-based participatory research in the California Health
Interview Survey. _Prev Chronic Dis_, 2(4), A03.
INTRODUCTION: The California Health Interview Survey, the largest state
health survey in the United States, uses community-based participatory
research principles to develop each cycle. Other large-scale health
surveys rarely include participatory research approaches. Every 2 years,
the California Health Interview Survey generates state and local
population-based data on health insurance coverage, access to health
care, chronic disease prevalence and management, health behaviors and
disease prevention, and other health issues in California. The survey is
used for policy and program development, advocacy, and research.
METHODS: The development of the California Health Interview Survey
involves more than 145 people from more than 60 state and local
policymaking bodies, public health agencies, advocacy groups, research
organizations, and health care organizations. They participate as
volunteers in an advisory board, on technical advisory committees, and
in work groups that interact with California Health Interview Survey
research staff in an accountable advisory process that shapes survey
topics, measures, and sample design and determines languages selected
for translation. Survey results and data are provided to the communities
involved in the survey. RESULTS: California Health Interview Survey data
have been widely used by local, state, and national public health
leaders, policymakers, advocates, and researchers to improve access to
health insurance and health care services and to develop and target
prevention programs for obesity and chronic illnesses. CONCLUSION: The
California Health Interview Survey participatory research model has been
an effective approach to planning and implementing a health survey and
should be considered by developers of other large health surveys.
4. Burhansstipanov, L., Christopher, S., & Schumacher, S. A. (2005).
Lessons learned from community-based participatory research in Indian
country. _Cancer Control_, 12(Suppl 2), 70-76.
The purpose of this article is to share lessons learned from
implementing community-based participatory research (CBPR) in Indian
Country that may be generalizable to other medically underserved
communities. CBPR is currently included in multiple grant announcements
by the National Institute of Health and Centers for Disease Control and
Prevention, but information about this methodology vs traditional
research methodology is often misleading. This article addresses some
common mistakes made by academic research institutes by sharing what we
have learned about how CBPR can be implemented in a respectful manner.
The majority of tribal Nations prefer, if not mandate, that CBPR be used
in most proposed studies involving their communities today.
5. Burroughs, E., Peck, L. E., Sharpe, P. A., Granner, M. L., Bryant, C.
A., & Fields, R. (2006). Using focus groups in the consumer research
phase of a social marketing program to promote moderate-intensity
physical activity and walking trail use in Sumter County, South
Carolina. _Prev Chronic Dis_, 3(1).
INTRODUCTION: The use of social marketing approaches in public health
practice is increasing. Using marketing concepts such as the "four Ps"
(product, price, place, and promotion), social marketing borrows from
the principles of commercial marketing but promotes beneficial health
behaviors. Consumer research is used to segment the population and
develop a strategy based on those marketing concepts. In a
community-based participatory research study, 17 focus groups were used
in consumer research to develop a social marketing program to promote
walking and other moderate-intensity physical activities. METHODS: Two
phases of focus groups were conducted. Phase 1 groups, which included
both men and women, were asked to respond to questions that would guide
the development of a social marketing program based on social marketing
concepts. Phase 1 also determined the intervention's target audience,
which was irregularly active women aged 35 to 54. Phase 2 groups,
composed of members of the target audience, were asked to further define
the product and discuss specific promotion strategies. RESULTS: Phase 1
participants determined that the program product, or target behavior,
should be walking. In addition, they identified price, place, and
promotion strategies. Phase 2 participants determined that
moderate-intensity physical activity is best promoted using the term
exercise and offered suggestions for marketing walking, or exercise, to
the target audience. CONCLUSION: There have been few published studies
of social marketing campaigns to promote physical activity. In this
study, focus groups were key to understanding the target audience in a
way that would not have been accomplished with quantitative data alone.
The group discussions generated important insights into values and
motivations that affect consumers' decisions to adopt a product or
behavior. The focus group results guided the development of a social
marketing program to promote physical activity in the target audience in
Sumter County, South Carolina.
6. Chen, D. T., Jones, L., & Gelberg, L. (2006). Ethics of clinical
research within a community-academic partnered participatory framework.
_Ethnicity & Disease_, 16(1 Suppl 1), 118-135.
Recommendations for reducing racial and ethnic disparities in health and
health care suggest that clinical researchers try community-based
participatory research (CBPR). While the body of literature discussing
the ethics of CBPR continues to grow, we are not aware of a specific
attempt to provide a structure for analyzing the ethics of clinical
research using a CBPR approach. We adapt a framework developed by
Emanuel, Wendler, and Grady articulating seven requirements for ethical
clinical research to clinical research using a CBPR approach. We
incorporate findings from the literature on CBPR and identify some of
the ethical and practical challenges from our experiences working in
CBPR as academics and community members. We find Emanuel et al's
framework easily adaptable for CBPR. Six of the requirements are
flexible enough to accommodate the needs of CBPR; they are: social or
scientific value, scientific validity, fair subject selection, favorable
risk-benefit ratio, independent review, and informed consent; We suggest
that the seventh requirement, respect for potential and enrolled
participants, be amended to respect for potential and enrolled
participants, community, and research partners to acknowledge that
separate attention should be paid to relationships on these three
levels. This adapted framework can guide community-academic partnerships
as they evaluate whether to proceed with potential clinical research
studies and as they work to enhance the ethics of clinical research
studies using a CBPR approach.
7. Chung, B. W., Corbett, C. E., Boulet, B., Cummings, J. R., Paxton,
K., McDaniel, S., et al. (2006). Talking Wellness: A description of a
community-academic partnered project to engage an African-American
community around depression through the use of poetry, film, and
photography. _Ethnicity & Disease_, 16(1 Suppl 1), 67-78.
The design, implementation, and preliminary evaluation of an enhanced
community-engagement program that uses poetry, film, and photography at
a film festival in south Los Angeles is described. This project is one
of several Talking Wellness projects designed to develop social capital
and enhance community engagement in projects designed to improve the
community's capacity to communicate effectively about depression, to
decrease the associated stigma, and to participate in the design and
evaluation of research interventions. The high degree of collaboration
in the development and evaluation of this community participatory
research model is illustrated by describing the selection and design of
the intervention and the development of the survey questionnaires used
for data collection. The project is described from the perspective of
community members involved in the process. [References: 20]
8. Fauchald, S. K. (2006). Community-based research to explore safer sex
behaviors among women: Implications for CNS practice. _Clinical Nurse
Specialist_, 20(2), 68-72.
Purpose/Objectives: This article illustrates how data from
community-based surveys can be used to inform clinical nurse specialist
(CNS) practice and ultimately influence patient care related to sex
behaviors. Background/Rationale: Clinical nurse specialists design,
implement, and evaluate research to develop specific prevention and
intervention strategies for populations. Much of this research is
conducted in the tertiary setting although many of the interventions are
carried out in the community setting. Description of the Project: A
sample of rural women (N = 578) participated in a community-based survey
to determine characteristics which influence safer sex behaviors.
Outcome: Results of the survey suggest that age, education, and
relationship status influence safer sex behaviors. Women in the
community tended to believe that safer sex behaviors were linked to
pregnancy prevention and lacked understanding about the importance of
safer sex behaviors to prevent sexually transmitted diseases including
HIV/AIDS. Interpretation/Conclusion: The findings of this study can
inform CNSs about sex behaviors among women in a selected community,
translating community-based research into evidence-based,
patient-centered care. Implications for Nursing Practice: Results from
community-based research can be used to develop educational and
prevention programs, and interventions for specialty populations.
[References: 21]
9. Fawcett, S. B., Schultz, J. A., Carson, V. L., Renault, V. A., &
Francisco, V. T. (2003). "Using Internet based tools to build capacity
for community based participatory research and other efforts to promote
community health and development". In M. Minkler &N. Wallerstein (Eds.),
_Community Based Participatory Research for Health_ (pp. 155-178). San
Francisco: Josey-Bass.
(from the chapter) This chapter explores how Internet based tools can be
used in the context of community based participatory research (CBPR) and
other community health and development work in pursuit of
community-determined goals. A five-component framework for building
capacity for this shared work ranges from understanding the context in
which the work occurs to planning for sustainability. Core competencies
related to CBPR are presented, along with examples of Internet based
tools that can make these activities both more rewarding and easier to
accomplish. This chapter then takes a detailed look at one such tool,
the Community Work Station of the Community Tool Box, and its utility
for CBPR partners as they work together in identifying community assets
and issues as well as in other stages of the CBPR process. This chapter
concludes with a discussion of the challenges and benefits of using
Internet tools to enhance CBPR and other efforts to improve community
health and development.
10. Hammad, A. S., & Nriagu, J. O. (2005). Community-based participatory
research of environmental factors on Arab Americans in metropolitan
Detroit: Progress report. _Ethnicity & Disease_, 15(1), 52-53.
11. Hills, M., & Mullet, J. (2005). Community-based research: A catalyst
for transforming primary health care rhetoric into practice. _Primary
Health Care Research and Development_, 6(4), 279-290.
The Canadian health care system is under increased pressure to reform.
While some advocates lobby for more physicians and more resources to fix
the ailing system, many reports point to another potential solution -
implementing primary health care (PHC). Implementing PHC will not be
easy. Even though there is substantial evidence to support the efficacy
and cost effectiveness of PHC, its implementation will require
substantial changes in practice. Community-based research (CBR) has the
potential to be the catalyst for the type of change that is required. A
multidisciplinary, multisectoral inquiry team has been funded to use CBR
to reconceptualize and transform PHC service delivery in British
Columbia, Canada. Although the research project is in its initial phase,
it is anticipated that the research will provide new, holistic, and
comprehensive frameworks for practice. This paper describes the process
used to bring about these changes.
12. Hueston, W. J., Mainous, A. G., 3rd, Weiss, B. D., Macaulay, A. C.,
Hickner, J., Sherwood, R. A., et al. (2006). Protecting participants in
family medicine research: A consensus statement on improving research
integrity and participants' safety in educational research,
community-based participatory research, and practice network research.
_Family Medicine_, 38(2), 116-120.
Recent events that include the deaths of research subjects and the
falsification of data have drawn greater scrutiny on assuring research
data integrity and protecting participants. Several organizations have
created guidelines to help guide researchers working in the area of
clinical trials and ensure that their research is safe and valid.
However, family medicine researchers often engage in research that
differs from a typical clinical trial. Investigators working in the
areas of educational research, community-based participatory research,
and practice-based network research would benefit from similar
recommendations to guide their own research. With funding from the US
Office of Research Integrity and the Association of American Medical
Colleges, we convened a panel to review issues of data integrity and
participant protection in educational research, community-based
participatory research, and research conducted by practice-based
networks. The panel generated 11 recommendations for researchers working
in these areas. Three key recommendations include the need for (1) all
educational research to undergo review and approval by an institutional
review board (IRB), (2) community-based participatory research to be
approved not just by an IRB but also by appropriate community
representatives, and (3) practice-based researchers to undertake only
valid and meaningful studies that can be reviewed by a central IRB,
rather than separate IRBs for each participating practice.
13. Kaplan, S. A., Calman, N. S., Golub, M., Davis, J. H., Ruddock, C.,
& Billings, J. (2006). Racial and ethnic disparities in health: A view
from the South Bronx. _Journal of Health Care for the Poor &
Underserved_, 17(1), 116-127.
This study seeks to understand the perspective of Black and
Hispanic/Latino residents of the South Bronx, New York, on the causes of
persistent racial and ethnic disparities in health outcomes. In
particular, it focuses on how people who live in this community perceive
and interact with the health care system. Findings from 9 focus groups
with 110 participants revealed a deep and pervasive distrust of the
health care system and a sense of being disrespected, exacerbated by
difficulties that patients experience in communicating with their
providers. The paper suggests how health care institutions might respond
to these perceptions.
14. Katz, D. L., & Katz, D. L. (2004). Representing your community in
community-based participatory research: Differences made and measured.
_Preventing Chronic Disease_, 1(1), A12.
15. Lewis, T. C., Robins, T. G., Dvonch, J. T., Keeler, G. J., Yip, F.
Y., Mentz, G. B., et al. (2005). Air pollution-associated changes in
lung function among asthmatic children in Detroit. _Environmental Health
Perspectives_, 113(8), 1068-1075.
In a longitudinal cohort study of primary-school-age children with
asthma in Detroit, Michigan, we examined relationships between lung
function and ambient levels of particulate matter <= 10 mu m and <= 2.5
mu m in diameter (PM10 and PM2.5) and ozone at varying lag intervals
using generalized estimating equations. Models considered effect
modification by maintenance corticostercrid (CS) use and by the presence
of an upper respiratory infection (URI) as recorded in a daily diary
among 86 children who participated in six 2-week seasonal assessments
from winter 2001 through spring 2002. Participants were predominantly
African American from families with low income, and > 75% were
categorized as having persistent asthma. In both single-pollutant and
two-pollutant models, many regressions demonstrated associations between
higher exposure to ambient pollutants and poorer lung function
(increased diurnal variability and decreased lowest daily values for
forced expiratory volume in 1 sec) among children using CSs but not
among those not using CSs, and among children reporting URI symptoms but
not among those who did not report URIs. Our findings suggest that
levels of air pollutants in Detroit, which are above the current
National Ambient Air Quality Standards, adversely affect lung function
of susceptible asthmatic children.
16. Martin, M., Hernandez, O., Naureckas, E., & Lantos, J. (2005).
Improving asthma research in an inner-city Latino neighborhood with
community health workers. _Journal of Asthma_, 42(10), 891-895.
This study tests the feasibility of a partnership between an academic
medical center and community health workers to perform mutually
beneficial research investigating asthma in an urban Latino
neighborhood. Community heath workers participated in the study design,
instrument development, implementation, and analysis. The 103
participants recruited by the community health workers were primarily
Mexican with very low education and acculturation levels. After the
1-year enrollment period, the community health workers described the
challenges of data collection and gave explanations for the access to
care outcomes. This academic-community partnership showed that community
health workers can be effective research partners.
17. Mulvaney-Day, N. E., Rappaport, N., Alegria, M., & Codianne, L. M.
(2006). Developing systems interventions in a school setting: An
application of community-based participatory research for mental health.
_Ethnicity & Disease_, 16(1 Suppl 1), 107-117.
Objectives: The goal of this study was to develop systems interventions
in a public school district using community-based participatory research
(CBPR) methods to improve the social and academic functioning of
children from racial and ethnic minority populations. Design: The study
used qualitative methods in the process of problem definition and
intervention planning, including in-depth qualitative interviews and
stakeholder dialogue groups. The study was conducted at three levels-the
school system as a whole, two individual schools, and a
multiple-stakeholder participatory group. Setting: The study took place
in a public school system in an urban city with a population of 101,355
and in two public schools located in this city. Participants: The CBPR
team included two researchers, a researcher/consulting psychiatrist in
the schools, the director of the special education office, her
management team, four teachers, and two school-based administrators.
Interventions: The CBPR group engaged in a process of problem definition
and intervention planning at all three levels of the system. In
addition, both schools initiated systems interventions to target the
needs of their school environments. Results: The project led to system
interventions at both schools, clarity about the policy constraints to
effective collaboration, and increased awareness regarding the
behavioral and academic needs of minority children in the schools. The
process produced a series of questions to use as a framework in CBPR
partnership development. Conclusions: The CBPR approach can expand the
scope of mental-health services research, particularly related to
services for racial and ethnic minorities.
18. Patel, K. K., Koegel, P., Booker, T., Jones, L., & Wells, K. (2006).
Innovative approaches to obtaining community feedback in the Witness for
Wellness experience. _Ethnicity & Disease_, 16(1 Suppl 1), 35-42.
Background: Awareness of the need for innovative approaches to obtaining
feedback in community-based participatory research (CBPR) is increasing.
These innovative approaches should incorporate the core principles of
CBPR, including equity and co-learning. Additionally, the methods should
be culturally appropriate and inclusive of the community and academic
partners. Objective: To develop and implement two separate methods of
obtaining community feedback for two activities in a CBPR initiative: 1)
discussion of three work-group plans during a leadership council
meeting; and 2) feedback from the work groups to the target community in
a public setting. Methods: in order to facilitate a feedback process for
the discussion of 3 separate group action plans, an adapted version of
the modified Delphi technique was used during which 42 community and
academic partners voted and evaluated each plan both before and after
group discussion. Results were immediately posted on a projection screen
for the group to process. The second community feedback method
incorporated the use of an audience response system (ARS) in order to
obtain responses from 187 community participants after hearing summaries
of the Witness for Wellness work-group action plans. More than 60% of
the respondents added that the use of the handheld device made research
seem more relevant and less intimidating. Conclusions: Both the use of
the adapted modified Delphi process and ARS were effective in capturing
community feedback related to two group activities in the Witness for
Wellness initiative. Both methods also allowed participants to
understand the role of research in a community setting.
19. Wells, K. B., Staunton, A., Norris, K. C., Bluthenthal, R., Chung,
B. W., Gelberg, L., et al. (2006). Building an academic-community
partnered network for clinical services research: The Community Health
Improvement Collaborative (CHIC). _Ethnicity & Disease_, 16(1 Suppl 1),
3-17.
Objective: Community-based participatory research is recommended for
research on health disparities and to improve uptake of clinical
research findings. We describe the development of a multicenter
consortium designed to support a community agency-academic partner
infrastructure to support community-based, health-services research on
multiple sources of health and healthcare disparities in local
communities. Design: We describe the development of the Los Angeles
Community Health Improvement Collaborative (CHIC). Results: The CHIC
partners examined the research capacity and health priorities of its
partners and developed a research agenda focused on four tracer
conditions (depression, violence, diabetes, and obesity) and four areas
for development of research capacity: public participation in all phases
of research; understanding community and organizational context for
clinical services interventions; practical clinical services trial
methods; and advancing health information technology for clinical
services research. The partners pooled resources to develop these areas
for the tracer conditions. Conclusions: The challenges of a
participatory approach to community-based clinical services research go
beyond the significant methodologic and operational issues for specific
projects and include building a sustainable capacity for research,
community programs, and partnership across diverse communities and
stakeholder organizations even when funding sources are not fully
aligned with these goals.
20. Williams, A.-l., Selwyn, P. A., McCorkle, R., Molde, S., Liberti,
L., & Katz, D. L. (2005). Application of Community-Based Participatory
Research Methods to a Study of Complementary Medicine Interventions at
End of Life. _Complementary Health Practice Review_, 10(2), 91-104.
Community-based participatory research (CBPR) principles can be
successfully applied to the design and implementation of a complementary
medicine study for adults with end-stage AIDS. The Yale Prevention
Research Center partnered with Leeway, Inc., an AIDS-dedicated nursing
facility, and other academic and clinical entities to conduct a
randomized, controlled pilot trial of meditation and massage on quality
of life at the end of life. Using CBPR principles, a methodology was
developed that was scientifically rigorous, highly respectful, and
acceptable to the 91% minority study population. Using continuous, open
communication among all involved parties, challenges were satisfactorily
addressed in a timely manner. Fifty-eight residents (97% of those
eligible) with end-stage AIDS participated from November 2001 to
September 2003. Subjects received 1-month interventions of meditation,
massage, combined meditation and massage, or standard care. The study of
quality-of-life in end-stage AIDS poses unique challenges well met by
applying CBPR principles to an academic-community research partnership.
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