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REGISTER NOW for Crossroads II: Community-Based Collaborative Research
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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 (5.5: May 22, 2007)
1. Aronson, R. E., A. B. Wallis, et al. (2007). Ethnographically
informed community evaluation: A framework and approach for evaluating
community-based initiatives. _Maternal & Child Health Journal_, 11(2),
97-109.
OBJECTIVES: This paper describes ethnographically informed community
evaluation (EICE), a framework for evaluating complex community-based
interventions, and illustrates its use in the evaluation of Baltimore
City Healthy Start, a federally funded infant mortality prevention
project. EICE, which is influenced by cultural anthropology and
assets-based community assessment, supports continuous program
improvement, resident involvement, and measurement of community-level
change. This approach takes into account both individual and contextual
levels of analysis. METHODS: The evaluation coupled a participatory
approach with qualitative and survey research methods to study community
context and how it might contribute to infant mortality and influence
program implementation, and to assess community change resulting from
the program. Data collection included focus groups, key informant
interviews, surveys, neighborhood mapping, journaling, and a study of
community problem-solving. RESULTS: The evaluation provided
program-related feedback to staff, contributed to a collective
understanding of the local context, validated and augmented outcome
findings, and imparted skills and a sense of empowerment to the
neighborhood. Results reveal a community burdened by crime and social
problems, yet showing great diversity in physical and social conditions
when examined at the census block group level. Nevertheless, these
social and physical hazards in the community are more salient than any
specific health issue such as infant mortality. CONCLUSIONS: EICE is a
powerful evaluation approach able to respond to the complexities of
community-based maternal and child health initiatives designed to
institute changes across multiple domains. EICE may be used, in whole or
in part, as a supplement to traditional designs.
2. Bowden, W. P., S. D. Rhodes, et al. (2006). Sociocultural
determinants of HIV/AIDS risk and service use among immigrant Latinos in
North Carolina. _Hispanic Journal of Behavioral Sciences_, 28(4),
546-562.
Latinos in the United States have been disproportionately affected by
the intersecting epidemics of HIV and sexually transmitted diseases.
Using a community-based participatory research approach to problem
identification, the objective of this study is to explore sociocultural
determinants of HIV/AIDS risk and service use among immigrant Latino men
living with HIV/AIDS in North Carolina. In-depth key-informant
inter-views with stakeholders (n = 8) and Latino men living with
HIV/AIDS (n = 10) were conducted. Major themes identified among Latino
men living with HIV/AIDS are misconceptions about HIV/AIDS prevention
and treatment, intracommunity discrimination against individuals living
with HIV, and feared discovery of their undocumented status. Further
research is needed to reduce HIV risk and improve access to medical
services among Latino men living with HIV/AIDS.
3. Boyer, B. B., G. V. Mohatt, et al. (2007). Sharing results from
complex disease genetics studies: A community based participatory
research approach. _International Journal of Circumpolar Health_, 66(1),
19-30.
Objectives. Dissemination of research results to communities builds
capacity of the community to understand and utilize the results. The
objective of this manuscript was to propose a culturally appropriate
approach to disseminate complex disease genetics research findings in
small Alaska Native communities. Study Design. The Center for Alaska
Native Health Research is a community-based participatory research
project (CBPR) directed at understanding the interactions between
genetic, nutritional and psychosocial risk factors for obesity,
diabetes, and cardiovascular disease in Yup'ik Eskimos. Methods. We have
consulted with regional healthcare providers, tribal leaders, and
university-, local-, and national-institutional review boards to
identify potential mechanisms for sharing population-based genetics
research results or progress. Results. We propose a six step
CBPR-approach to conducting genetics research in isolated identifiable
communities. This CPBR-approach includes generating a common research
question, determining community interest, recruitment, capacity
building, sharing power and control, avoiding group harm, and
development of culturally appropriate dissemination procedures.
Conclusions. Research scientists and community members should both
benefit from population-based genetics research. Although we are just
beginning our discussions with regard to sharing genetics research
progress and findings, we believe that it is essential move forward as
co-researchers in the CBPR enterprise.
4. Brugge, D., K. Welker-Hood, et al. (2006). Association and
correlation of self-reported home environmental factors and health
symptoms. _Archives of Environmental & Occupational Health_, 61(1),
33-41.
The authors used community-based participatory research to survey 238
residents in public housing. They developed 9 exposure and 2 health
symptom indexes through exploratory factor analyses. The univariate
analysis showed that most environmental risk factors were associated
with the symptom indexes. The authors found a statistically significant
intercorrelation between 29 of 36 risk factor pairs. Because of this,
most of the univariate associations lost statistical significance in
multivariate models. The authors found a normal distribution of risk
factors across household; however, risk factors per apartment were
associated with symptoms. Environmental risk factors accounted for 2% to
26% of the variation in symptoms. The analysis suggests that correlation
between factors could affect surveys in which researchers assess a small
number of housing risk factors or assess larger numbers of factors
without testing intercorrelation. The analysis is consistent with the
possibility that building quality or housekeeping might drive the
development of risk factors.
5. Cartwright, E. and P. Allotey. (2006). Women's Health: New Frontiers
in Advocacy & Social Justice Research-Introduction. _Women & Health_,
43(4), 1-6.
Public health research and practice today faces many new challenges.
Major threats to human security have occurred. These challenges create
and sustain vulnerabilities that require new and innovative
interventions, which take account of the importance of the power
differentials between the vulnerable and marginalized populations most
affected by these threats. In this collection, we have brought together
a unique selection of papers that demonstrate the importance of and
outcomes of intervention efforts when the researcher has taken the role
of advocate and the use of community-based participatory action
research. The common theme across the varied efforts described in the
papers in this volume was marginalization of community groups. The
papers in this volume describe different levels of community
participation in the research process. Each paper describes an
implementation of the CBPR(community-based participatory research) model
that is uniquely tailored to the research questions and needs of the
particular study community. Taken as a whole, these papers demonstrate
that CBPR is a flexible paradigm within which scientifically rigorous
research can be conducted while attending to the felt needs of the
community members.
6. Cartwright, E., D. Schow, et al. (2006). Using participatory research
to build an effective type 2 diabetes intervention: The process of
advocacy among female hispanic farmworkers and their families in
Southeast Idaho. _Women & Health_, 43(4), 89-109.
The Formando Nuestro Futuro/Shaping our Future project (herewith,
Formando) is a community-based participative research (CBPR) focused on
type 2 diabetes. It was conceptualized and designed by a team of
university-based researchers and community health workers (promotores).
This article describes the process of establishing a CBPR project such
as Formando and the most current results from that project. The Formando
project is an example of health-focused advocacy with the Mexican
agricultural workers in Southeast (SE) Idaho. To date, 172 qualitative
interviews on participants' knowledge about type 2 diabetes have been
carried out with farmworker women and their families. Biometric data
(heights, weights, blood pressures and fasting blood glucoses) were
obtained from participants. Fieldnotes, focus group discussions and key
informants were used to triangulate findings. Significant quantitative
findings include that age was significantly associated with Body Mass
Index (BMI) (p < 0.001, Spearman Correlation < 0.001) and with elevated
fasting blood glucose (p < 0.001, Spearman Correlation < 0.001). The
qualitative interviews were thematically analyzed. Key themes associated
with type 2-diabetes in this community were the connection between
thinness and vanity, dieting and starvation and the onset of diabetes as
a result of, what social scientists call, structural violence within the
immigrants' daily lives. We conclude that long-term commitment to using
the CBPR approach in these Mexican agricultural communities is an
effective way to engage in health research and to establish real and
meaningful dialogue with Community members.
7. Chrisman, N. J. (2007). Extending cultural competence through systems
change: Academic, hospital, and community partnerships. _Journal of
Transcultural Nursing_, 18(1 Suppl S), 68S-76S.
Work on cultural competence has a long history in nursing, yet we have
not successfully institutionalized these attitudes and skills throughout
education and practice. An effective approach to promoting widespread
cultural competence is to work at the system level in which coalitions
of community agencies partner with academic and health care
organizations. A systems approach includes all health practitioners,
reducing current discrepancies across disciplines, and establishes
cultural competence as the standard. Work in and with communities places
students and practitioners more consistently in cross-cultural
circumstances. Implementing this vision will require national as well as
local leadership across public and private sectors. [References: 28]
8. Fowles, E. R. (2007). Collaborative methodologies for advancing the
health of underserved women. _Family & Community Health_, 30(1 Suppl S),
S53-S63.
Collaborative methodologies that incorporate local community members
offer a unique approach to conducting women's health research. These
approaches actively seek to mobilize community resources to solve
healthcare problems and may be effectively implemented, accepted, and
sustained. Understanding differences among collaborative methodologies
is needed to assist the researcher in selecting the strategy that is
most consistent with the study purpose and setting. The purpose of this
article is to discuss the processes involved in these methodologies and
the role of the researcher and the research community and compare how
these methodologies differ in identifying and evaluating healthcare
outcomes for underserved women.
9. Gielen, A. C., D. A. Sleet, et al., Eds. (2006). "Injury and violence
prevention: Behavioral Science Theories, Methods, and Applications".
_Community Models and Approaches for Interventions_. San Francisco, CA,
Jossey-Bass.
Injury and Violence Prevention: Behavioral Science Theories, Methods,
and Applications is a cutting-edge volume that provides a comprehensive
understanding of injury and violence prevention. This detailed resource
draws on the breadth and depth of many scientific disciplines and public
health practice experiences. Written by internationally renowned experts
in the field, Injury and Violence Prevention emphasizes the specific
theories, methods, and applications that make behavioral science
approaches relevant and central to reducing injury-related harm. The
book covers a wide range of topics, including the most frequently used
behavior change theories and models and shows how they have beenžor
could bežapplied to injury problems, the most commonly used research
methods for understanding and influencing behavior change, behavior
change issues for specific injury topic areas, and a variety of
cross-cutting issues important to the field.
10. Gleason-Comstock, J., A. Streater, et al. (2006). Development of a
Community-Based Participatory Research Effort to Evaluate Conventional
HIV Testing (CHT) and HIV Rapid Testing (HRT). _Journal of HIV/AIDS &
Social Services_, 5(3-4), 201-219.
A community-based participatory research (CBPR) project was created to
study the effects of changing HIV testing protocols on client risk
behaviors in an urban area. Concerns raised by the agency advisory group
led to development of research questions that needed to be addressed
within the community. The article focuses on development of the research
partnership and study enrollment during the first year of the project.
Challenges of assimilating rapid advances in health technology while
conducting outreach to high-risk clients are discussed. Successes and
lessons learned are described, including adaptation of theory-based
interventions to research protocol and multi-level community
coordination.
11. Guerin, P. B., P. Allotey, et al. (2006). Advocacy as a means to an
end: Assisting refugee women to take control of their reproductive
health needs. _Women & Health_, 43(4), 7-25.
Negotiating reproductive rights is particularly complex for resettling
migrant women from refugee backgrounds. In our ongoing work with women
who have fled from countries in Africa and the Middle East, and have
resettled in Australia and New Zealand, subtleties of discrimination and
perceptions of human rights discriminations were revealed through the
complex interplay between research and advocacy. Community Based
Participatory Research (CBPR) has therefore been critical in assisting
women to identify their needs and negotiate acceptable solutions with
health services. This paper presents qualitative and quantitative
findings of research with women from refugee backgrounds in Australia (n
= 255) and New Zealand (n = 64). The research questions were a
combination of community-driven and researcher initiated issues and the
projects developed through a continuous iterative process involving
feedback from women in the community. We highlight the essential role of
advocacy in CBPR and how that can enhance research quality. We argue for
the justification of this approach as not only valid and credible but
essential in research with these and other communities.
12. Halbert, C. H., B. Weathers, et al. (2006). Developing an
academic-community partnership for research in prostate cancer. _Journal
of Cancer Education_, 21(2), 99-103.
Community-based participatory research (CBPR) is an important strategy
for reducing racial disparities in health outcomes. Academic-community
partnerships are central to CBPR; however, there are few examples of how
to develop these partnerships for prostate cancer research. This report
describes the methods used to develop an academic-community partnership
between investigators at the University of Pennsylvania and members of
the Philadelphia chapter of the National Black Leadership Initiative on
Cancer for CBPR on quality of life following prostate cancer diagnosis.
Our experiences demonstrate that a significant investment of time is
needed to identify a community partner for prostate cancer research and
develop an effective partnership.
13. Lantz, P. M., B. A. Israel, et al. (2006). "Community-Based
Participatory Research: Rationale and Relevance for Social
Epidemiology." _Methods for Social Epidemiology_. J. M. Oakes and J. S.
Kaufman. San Francisco, CA, Jossey-Bass Press.
In this chapter, we provide an overview of CBPR and its relevance to
social epidemiology as a critical subfield of public health. We begin by
defining CBPR and presenting an overview of what has been written about
CBPR principles (or characteristics, grounded in theory and practice,
about the way in which this approach to research ought to proceed). We
then discuss the relevance of CBPR to social epidemiology, including
what to consider when deciding whether or not to use a CBPR approach in
a particular research endeavor. Next, we present some general guidance
regarding the process of CBPR, including a discussion of some common
challenges and facilitating factors that have been learned by those
engaged in this type of work. Finally, we conclude by offering our
perspective on some key issues and debates regarding CBPR in public
health research. [taken from text]
available online:
http://www.med.umich.edu/csp/Course%20materials/Fall%202005/jacobson_cbpr_socepid.pdf
14. MacDonald, C. J., E. J. Stodel, et al. (2006). Using Community-Based
Participatory Research for an Online Dementia Care Program. _Canadian
Journal of Program Evaluation_, 21(2), 81-104.
In this article we describe our experiences using a Community- Based
Participatory Research orientation (CBPR; Minkler & Wallerstein, 2003)
with a group of community professionals in healthcare institutions. The
purpose of the project was to design, develop, deliver, and evaluate an
online dementia care program for registered and non-registered
healthcare workers in longterm care homes who work with residents with
dementia. The Demand-Driven Learning Model (DDLM; MacDonald, Stodel,
Farres, Breithaupt, & Gabriel, 2001) was used to guide this process. The
CBPR approach allowed multiple views, attitudes, and experiences to
strengthen the content, delivery, and evaluation of the program. By
addressing some of the issues involved in the process, we hope that our
experiences documented in this article will help others develop research
partnerships with community professionals, as well as plan, implement,
and evaluate collaborative online healthcare training programs.
15. Mohatt, G. V., R. Plaetke, et al. (2007). The center for Alaska
Native Health Research study: A community-based participatory research
study of obesity and chronic disease-related protective and risk
factors. _International Journal of Circumpolar Health_, 66(1), 8-18.
Objectives. To describe the background, approach and general results of
the Center for Alaska Native Health Research (CANHR) study. Study
Design. This was a cross-sectional Community-Based Participatory
Research (CBPR) study with one tribal group to assess risk and
protection for obesity and the risk factors related to chronic disease,
diabetes and cardiovascular disease. Methods. A combination of
biological, genetic, nutritional and psychosocial measurements were
taken on 922 Alaska Native participants in ten communities in
Southwestern Alaska. The paper reports on data from 753 adult
participants. Results. The prevalence of type 2 diabetes is 3.3% in the
sample population. Metabolic syndrome is significantly lower among the
males and equal for females when compared with Caucasians in the NHANES
III sample. Obesity among adults is now at the national average. Risk
factors for chronic disease include a shift to a Westernized diet,
stress, obesity and impaired fasting glucose and protective factors
include high levels of polyunsaturated fatty acid dietary intake.
Articles in this issue present specific results in these areas.
Conclusions. The data strongly indicate that, in general, Yup'ik people
in our study are metabolically healthy and that diet and life style
provide a delicate combination of protective and risk factors. The
results strongly indicate that solution focused research (1) utilizing
primary and secondary prevention strategies may provide evidence for how
to intervene to prevent further increases of chronic diseases. Research
that focuses on relating the intrinsic strengths of indigenous
worldviews and practices with basic research may contribute to positive
transformations in community health.
16. Oakes, J. M. and J. S. Kaufman, Eds. (2006). _Methods in social
epidemiology_. San Francisco, CA, Jossey-Bass.
(from the preface) This text addresses many important methodological
issues faced in contemporary social epidemiologic research. The
motivation for assembling this material is to increase the potential for
social epidemiology to contribute meaningfully to public health
knowledge and policy through stronger and clearer methodological
foundations. This volume is intended as a methods text and so is unlike
the handful of recent books on social epidemiology and the social
determinants of health that focus on substantive findings. The text is
loosely organized into three parts: Part One, Background; Part Two,
Measures and Measurement; and Part Three, Design and Analysis. Part One
contains a brief introductory chapter by Oakes and Kaufman that aims to
set the stage for the works that follow.
17. Osborn, C. J., D. L. Thombs, et al. (2007). Reconceptualizing
research on undergraduate alcohol use: the need for student engagement.
_Evaluation & the Health Professions_, 30(2), 118-37.
Community-based participatory research (CBPR) is presented as an
unrecognized and urgently needed approach for addressing the persistent
public health concern of college student drinking in the United States.
A major contention of this article is that the lack of progress in
reducing alcohol-related harm among college students during the past
several decades has been the research community's failure to effectively
engage and collaborate with undergraduates on shared concerns. The
challenges of addressing college student drinking are reviewed,
distinctive features of CBPR are described, and suggestions are provided
for adopting CBPR as a more viable approach than those offered by
traditional campus strategies.
18. Peres, F., J. C. Moreira, et al. (2006). Risk perception and
communication regarding pesticide use in rural work: A case study in Rio
de Janeiro State, Brazil. _International Journal of Occupational and
Environmental Health_ 12(4), 400-407.
In an agricultural region of Rio de Janeiro State, Brazil, rapid
assessment procedures were used for risk-perception studies based on
methodologic triangulation that included semi-structured interviews,
participatory observations, and focus groups. Data were qualitatively
categorized. Women's risk perception was prioritized, as they did not
recognize some risks they were exposed to during work activities. To
reach women likely to be exposed to pesticides, a photographic soap
opera (fotonovela) was constructed in collaboration with rural workers,
using community-based participatory research methods. Contents of the
risk-communication strategies included the harmful effects of
pesticides. Results showed that the inclusion of risk-perception studies
in the development of educative and risk-communication campaigns is very
important, bridging research to action.
19. Valente, T. W. (2006). Need, Demand, and External Validity in
Dissemination of Physical Activity Programs. _American Journal of
Preventive Medicine_, 31(4, Suppl 1), S5-S7.
This supplement compiles perspectives from seven research groups that
describe the experiences and challenges inherent in studying the
development, dissemination, diffusion, and utilization of physical
activity programs. All the authors wrestle somewhat with definitions:
How to distinguish dissemination from diffusion, marketing from
communication, and public from private systems. Tobacco-use prevention
and cessation provides the most prominent, although not necessarily most
appropriate, set of experiences. Community-based participatory research
(CBPR) provides the framework and tools needed to guide program
developers in how to include program recipients in the research and
development process so that appropriate interventions are designed in
the first place. The cumulative evidence from the enclosed articles
seems to suggest that behavioral science has matured considerably in the
past 40 years. We now have sophisticated frameworks and models to guide
our actions and can write confidently about the need to use CBPR to
design appropriate interventions that are first tested in efficacy
trials maximizing internal validity to establish their effectiveness.
20. Van Duyn, M. A., S. H. Reuben, et al. (2006). Special populations
networks: Themes and lessons learned. _Cancer_, 107(8 Suppl S),
1945-1954.
The Special Populations Networks (SPN) Program was a 5-year, nationwide
project funded by the National Cancer Institute to reduce cancer-related
health disparities in minority and other underserved communities by
building community health infrastructure, improving cancer awareness and
use of cancer screening services, and increasing the cadre of minority
junior scientists studying disparities issues. Through collaborations
with a wide range of community and academic partners, the 18 grantee
organizations: 1) developed culturally sensitive cancer communications
approaches and materials; 2) conducted outreach and educational
activities appropriate to their communities' needs and diverse cultures;
and 3) trained and mentored young minority investigators who succeeded
in winning support for pilot projects addressing local cancer health
disparities issues, trained and deployed lay health workers, and worked
with community and health provider organizations to improve
understanding of cancer risk in these populations and encourage
participation in appropriate clinical trials. SPN activities were
grounded in community-based participatory research principles and
practice. This overview highlights major project themes, provides
examples of differing individual grantee approaches to similar issues,
and describes key lessons learned, as reported by the SPN projects, that
may guide future programmatic and research efforts to eliminate cancer
health disparities in the United States.
21. Wiginton, K. L. (2006). Advancing on the Discussion of
Gender-Specific Health Determinants. _Health Education & Behavior_,
33(6), 744-746.
This article offers an important perspective of the potential
determinants to be considered within the multidimensional term of
gender. The relevance of this discussion is expressed in a primary
recommendation from the Institute of Medicine's (IOM) 2001 report
(Exploring the Biological Contributions to Human Health: Does Sex
Matter?) to elucidate uses of the terms sex (biological) and gender
(self-concept; societal) and build a conceptual framework. Overall, the
author's conclusion that gender is multidimensional and should be
treated as such is well noted and supported by the aforementioned
documents. Collaborative work between behavioral and social researchers,
as well as biomedical researchers, would allow for this multidimensional
approach. One particular study design that holds much promise for
incorporating sex- and gender-specific components is community-based
participatory research (CBPR). With the inclusion of qualitative
methodologies, the collected data will offer a richer description of the
gender-specific components and would ideally complement quantitative
health data related to sex- and gender specific components.
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