|
ICR Abstracts: 4.1
|
The Institute for Community Research
|
Jan 18, 2006 07:46 PST
|
[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 (4.1: January 18, 2006)
1. Anderson, J. B. (2005). Unraveling health disparities: Examining the
dimensions of hypertension and diabetes through community engagement.
_Journal of Health Care for the Poor and Underserved_, 16(4), 91-117.
The contexts of people's lives can perpetuate racial and ethnic health
disparities. In this work, community members from four racial/ethnic
groups (Hispanic, Native American, African American, Asian) engaged in
an investigative process to analyze their own life conditions, and to
explore dimensions of their health behaviors and lifestyles when
managing diabetes and/or hypertension. Principal conclusions of the
researchers: (1) Respondents were knowledgeable about their health
conditions, but had no knowledge of health disparities. (2) Respondents
felt the media portrays members of racial/ethnic minorities as hopeless
and helpless; this discourages them from believing they can live
healthier or better lives. (3) The over-abundance of fast food and
unhealthy food eateries in minority communities contradicts the advice
of the public health industry. (4) The majority of all respondents were
in one of two stages relative to their willingness to change unhealthy
behaviors: not interested or already doing it.
2. Baylies, C. (2004). "Community-based research on AIDS in the context
of global inequalities: Making a virtue of necessity?" In E. Kalipeni,
S. Craddock, J. R. Oppong &J. Ghosh (Eds.), _HIV and AIDS in Africa:
Beyond epidemiology_ (pp. 229-239). Malden, MA: Blackwell Publishing.
Questions of ethics are close to the surface of all research around
AIDS, not just because of the stigma a diagnosis of HW confers, but by
virtue of the global inequalities which set the context for differential
rates of infection and uneven capacities to combat the epidemic. With
reference to research on community- based initiatives, this chapter
explores a range of questions relating to potential harm and benefit. It
deals with ethical issues which emerge in the research process itself,
but also, more widely, which relate to how research agendas are set. A
specific concern is with the way researchers intent on examining and
facilitating community-based action around AIDS can sometimes be drawn
toward making a virtue of necessity. They may find them- selves focusing
attention on coping strategies or prevention initiatives at the
community level precisely because funds which might otherwise serve to
arrest the epidemic and assist those affected are not forthcoming,
whether from poor governments or from those richer nations where AID
problem of significance, has been largely contained. (excerpt)
3. Bhuyan, R., Mell, M., Senturia, K., Sullivan, M., & Shiu-Thornton, S.
(2005). "Women must endure according to their karma": Cambodian
immigrant women talk about domestic violence. _Journal of Interpersonal
Violence_, 20(8), 902-921.
Asian populations living in the United States share similar cultural
values that influence their experiences with domestic violence. However,
it is critical to recognize how differential cultural beliefs in the
context of immigration and adjustment to life in the United States
affect attitudes, interpretations, and response to domestic violence.
This article discusses findings from community-based participatory
action research that explores how Cambodian immigrant women talk about
domestic violence, what forms of abuse contribute to domestic violence,
and what strategies they use to cope with and respond to abuse in their
lives. The richness of this research lies in the stories that immigrant
women tell about their struggle and their strength in addressing
domestic violence.
4. Bond, V., Chilikwela, L., Clay, S., Kafuma, T., & Nyblade, L. (2003).
Kanayaka, "The Light is On". Understanding HIV and AIDS related stigma
in urban and rural Zambia (No. USAID Cooperative Agreement No.
HRN-A-00-98-00044-00). Lusaka, Zambia: University Teaching Hospital,
School of Medicine, ZAMBART Project.
As the impact of the HIV and AIDS epidemic deepens in Sub-Saharan
Africa, and medical interventions to extend and improve the lives of
people living with HIV and AIDS become more widely available, the need
to understand and counter HIV and AIDS related stigma and discrimination
has grown more urgent. It is widely acknowledged that stigma is one of
the "greatest barriers" to HIV care and prevention. USAID recognized
that there was a dearth of data to inform the design of interventions to
reduce stigma and discriminatory practices and, in response, supported a
three-country research study to be conducted by the International Center
for Research (ICRW), the CHANGE Project and local partners in Africa.
The ZAMBART Project in partnership with Kara Counselling and Training
Trust (KCTT) collaborated with ICRW to carry out the research in Zambia
over a period of two years. Companion studies were conducted in Tanzania
and Ethiopia. All the studies carried out community based research in
urban and rural sites, and, used qualitative methods to investigate
stigma associated with HIV and AIDS - its causes, forms and consequences
and the social, economic and cultural factors that underlie it. The
multi-country findings have been written up in the form of a synthesis
report and, the country findings, in the form of individual country
reports. This report should be read alongside the children's report, the
synthesis report and other country reports. (excerpt)
Full text online: http://www.icrw.org/docs/kanayaka.pdf
5. Brown, P. (2003). Qualitative methods in environmental health
research. _Environmental Health Perspectives_, 111(14), 1789-1798.
Public health researchers increasingly turn to qualitative methods
either on their own or in combination with quantitative methods.
Qualitative methods are especially important to community environmental
health research, as they provide a way to produce community narratives
that give voice to individuals and characterize the community in a full
and complex fashion. This article first traces the legacy of qualitative
research in environmental health, then uses a case study of the author's
experiences studying the Woburn, Massachusetts, childhood leukemia
cluster to provide personal and scholarly insights on qualitative
approaches. That material then informs a discussion of important
components of qualitative methods in environmental health research,
including flexible study design, access, trust, empathy, and personal
shifts in the researcher's worldview, bias, and the nature of the
researcher's roles. A concluding discussion addresses issues in funding
policy and research practices.
6. Carey, T. S., Howard, D. L., Goldmon, M., Roberson, J. T., Godley, P.
A., & Ammerman, A. (2005). Developing effective interuniversity
partnerships and community-based research to address health disparities.
_Academic Medicine_, 80(11), 1039-1045.
Health disparities are an enormous challenge to American society.
Addressing these disparities is a priority for U.S. society and
especially for institutions of higher learning, with their threefold
mission of education, service, and research. Collaboration across
multiple intellectual disciplines will be critical as universities
address health disparities. In addition, universities must collaborate
with communities, with state partners, and with each other. Development
of these collaborations must be sensitive to the history and unique
characteristics of each academic institution and population. The authors
describe the challenges of all three types of collaboration, but
primarily focus on collaboration between research-intensive universities
and historically black colleges and universities. The authors describe a
four-year collaboration between Shaw University and the University of
North Carolina at Chapel Hill (UNC-CH). These universities strategically
developed multiple research initiatives to address health disparities,
building on modest early success and personal relationships. These
activities included participation by Shaw faculty in faculty development
activities, multiple collaborative pilot studies, and joint
participation in securing grants from the Agency for Health care
Research and Quality of the federal Department of Health and Human
Services and the National Institutes of Health, including a P-60 Project
EXPORT center grant. These multiple activities were sometimes led by
UNC-CH, sometimes by Shaw University. Open discussion of problems as
they arose, realistic expectations, and mutual recognition of the
strengths of each institution and its faculty have been critical in
achieving successful collaboration to date.
7. Chinman, M., Early, D., Ebener, P., Hunter, S., Imm, P., Jenkins, P.,
et al. (2004). Getting To Outcomes: A community-based participatory
approach to preventive interventions. _Journal of Interprofessional
Care_, 18(4), 441-443.
The article presents a short report on a community-based participatory
approach to preventive interventions. Substance abuse prevention can
improve community health, but only when implemented well.
Community-based participatory research (CBPR) -- community member
involvement in research -- provides a theoretical framework for
addressing this gap, often yielding research that is more relevant,
better utilized, and better quality. We submit that preventive
interventions themselves should be consistent with CBPR, or
Community-Based Participatory Interventions (CBPI). To facilitate CBPI,
we have developed a prevention process and corresponding technical
assistance package, called Getting To Outcomes (GTO). To test GTO, we
recently began a Centers for Disease Control funded participatory
research project in two substance abuse prevention coalitions within the
USA. Coalitions organize people and groups to intervene on multiple
levels (individual, organizational, policy) and sectors (parents, youth,
criminal justice, education) to improve community health. Although too
early for results, field notes show that the GTO process, facilitated by
the technical assistance, is already changing the way the programs are
implementing prevention.
8. Chrisman, N. J., Senturia, K., Tang, G., & Gheisar, B. (2002).
Qualitative process evaluation of urban community work: A preliminary
view. _Health Education & Behavior_, 29(2), 232-248.
Community-based and participatory research have become significant
activities during the past 15 years as public health practitioners and
researchers have sought new ways to provide effective disease prevention
and health promotion programs. It is also important that more examples
of evaluation schemes be contributed for field testing. The process
evaluation model offered here was based on an eclectic literature search
because the evaluators did not know what directions this Centers for
Disease Control and Prevention (CDC)-funded Urban Research Center would
take and wanted to be thorough. Participatory action research using
predominantly qualitative methods provided a research approach congruent
with the capacity-building and power-sharing principles of the center.
Seattle Partners for Healthy Communities is not a traditional community
project, acting primarily as a broker for expertise and community needs.
However, it has been successful in supporting and evaluating community
health projects.
9. Chung, P. J., Borneo, H., Kilpatrick, S. D., Lopez, D. M., Travis,
R., Lui, C., et al. (2005). Parent-adolescent communication about sex in
Filipino American families: A demonstration of community-based
participatory research. _Ambulatory Pediatrics_, 5(1), 50-55.
Objectives. -Pregnancy rates among Filipino American adolescents exceed
those of other Asian and Pacific Islander adolescents. Strong
parent-adolescent communication may promote healthy sexual development
and protect against adolescent sexual risk behaviors. We explored
communication barriers between Filipino American parents and
adolescents. Methods.-Using community-based participatory research
(CBPR), we collaborated with Filipino American community leaders,
parents, and adolescents to design a focus-group study. Trained
bilingual moderators conducted focus groups with 85 Filipino Americans
(41 parents and grandparents and 44 adolescents aged 14-18 years) from
various neighborhoods in Los Angeles. Sessions were recorded,
transcribed, coded, and analyzed for themes. Results. -Focus-group
participants appeared to divide sex information into 3 categories, which
we termed facts, feelings, and values. Adolescents emphasized facts and
feelings. Parents and grandparents emphasized facts and values. In
general, facts were obtained through school, feelings through friends,
and values through parents. The focus groups identified large barriers
to value transmission, stemming from adolescent acculturation to the
United States. Parents and grandparents felt that values were
transmitted best through traditional Filipino respect for parents who
often eschewed open discussion. Adolescents believed that open
discussion was necessary for value transmission to occur. The result was
bilateral withdrawal from family communication about sex. Conclusions.
-Our focus groups found that parent-child communication about sex,
especially regarding values, was limited. Potential causes included
conflicts between Filipino and US beliefs regarding respect for parents
and open discussion. Our results raise important questions about the
effect of acculturation on sex education for Filipino American
adolescents and demonstrate potential advantages of CBPR.
10. Flicker, S., Skinner, H., Read, S., Veinot, T., McClelland, A.,
Saulnier, P., et al. (2005). Failing through the cracks of the big
cities: Who is meeting the needs of HIV-positive youth? _Canadian
Journal of Public Health-Revue Canadienne De Sante Publique_, 96(4),
308-312.
Background: Globally, half of all new HIV infections occur among youth
under 25. As of June 30, 2002, more than 13,000 youth and young adults
had tested positive for HIV in Canada. Despite this prevalence, there is
a lack of resources for Canadian HIV-positive youth. Objective: To
investigate what can be done to better support the needs of HIV-positive
youth in Canada. Methods: A community-based participatory research
approach was adopted. Thirty-four qualitative in-depth semi-structured
interviews were conducted with youth (ages 12-24) living with HIV in
Ontario. A stakeholder group of youth living with HIV, professionals and
researchers collaboratively analyzed the data for emerging themes.
Results: When asked about areas in their lives where youth needed
support, three major themes emerged: 1) Personal feelings about HIV:
Youth identified a wide range of emotional response to their HIV status;
however feelings of isolation, loneliness and hopelessness were
dominant. 2) Barriers to full participation in society: Youth described
a number of social and structural barriers to their full participation
in society. 3) Specific support needs: Youth had difficulty accessing
appropriate support services; they had very mixed feelings about both
youth- and AIDS-serving organizations. Interpretation: The youth we
interviewed are interested in targeted programs, have difficulty
accessing appropriate resources and would benefit greatly from increased
social support. Specialized health and support services that are
developmentally appropriate may be necessary. Where specialized services
do exist, more research may be necessary to understand why they are
underutilized and/or perceived as inappropriate. While this was a small
exploratory study, our data suggest that better supporting the needs of
HIV-positive youth might directly benefit this vulnerable population.
11. Hyman, E. N., McCabe-Sellers, B. J., Strickland, E., Staggs, C. G.,
& Bogle, M. L. (2005). A qualitative tool for assessing community
readiness for nutrition and physical activity interventions: A component
of community-based participatory research. _Faseb Journal_, 19(5),
A1456-A1456.
12. Kimmel, C. A., Collman, G. W., Fields, N., & Eskenazi, B. (2005).
Lessons learned for the national children's study from the National
Institute of Environmental Health Sciences/US Environmental Protection
Agency Centers for Children's Environmental Health and Disease
Prevention Research. _Environmental Health Perspectives_, 113(10),
1414-1418.
This mini-monograph was developed to highlight the experiences of the
National Institute of Environmental Health Sciences (NIEHS)/U.S.
Environmental Protection Agency (EPA) Centers for Children's
Environmental Health and Disease Prevention Research, focusing
particularly on several areas of interest for the National Children's
Study. These include general methodologic issues for conducting
longitudinal birth cohort studies and community-based participatory
research and for measuring air pollution exposures, pesticide exposures,
asthma, and neuro-behavioral toxicity. Rather than a detailed
description of the studies in each of the centers, this series of
articles is intended to provide information on the practicalities of
conducting such intensive studies and the lessons learned. This
explication of lessons learned provides an outstanding opportunity for
the planners of the National Children's Study to draw on past
experiences that provide information on what has and has not worked when
studying diverse multiracial and multi-ethnic groups of children with
unique urban and rural exposures. The Children's Centers have addressed
and overcome many hurdles in their efforts to understand the link
between environmental exposures and health outcomes as well as
interactions between exposures and a variety of social and cultural
factors. Some of the major lessons learned include the critical
importance of long-term studies for assessing the full range of
developmental consequences of environmental exposures, recognition of
the unique challenges presented at different life stages for both
outcome and exposure measurement, and the importance of ethical issues
that must be dealt with in a changing medical and legal environment. It
is hoped that these articles will be of value to others who are
embarking on studies of children's environmental health.
13. Minkler, M. (2005). Community-based research partnerships:
Challenges and opportunities. _Journal of Urban Health_, 82(2 Suppl 2),
3-12.
The complexity of many urban health problems often makes them ill suited
to traditional research approaches and interventions. The resultant
frustration, together with community calls for genuine partnership in
the research process, has highlighted the importance of an alternative
paradigm. Community-based participatory research (CBPR) is presented as
a promising collaborative approach that combines systematic inquiry,
participation, and action to address urban health problems. Following a
brief review of its basic tenets and historical roots, key ways in which
CBPR adds value to urban health research are introduced and illustrated.
Case study examples from diverse international settings are used to
illustrate some of the difficult ethical challenges that may arise in
the course of CBPR partnership approaches. The concepts of partnership
synergy and cultural humility, together with protocols such as Green et
al.'s guidelines for appraising CBPR projects, are highlighted as useful
tools for urban health researchers seeking to apply this collaborative
approach and to deal effectively with the difficult ethical challenges
it can present.
14. Mosavel, M., Simon, C., van Stade, D., & Buchbinder, M. (2005).
Community-based participatory research (CBPR) in South Africa: Engaging
multiple constituents to shape the research question. _Social Science &
Medicine_, 61(12), 2577-2587.
Community engagement is an on-going, arduous, and necessary process for
developing effective health promotion programs. The challenges are
amplified when the particular health issue or research question is not
prominent in the consciousness of the targeted community. In this paper,
we explore the community-based participatory research (CBPR) model as a
means to negotiate a mutual agenda between communities and researchers.
The paper is focused on the (perceived) need for cervical cancer
screening in an under-resourced community in Cape Town, South Africa,
Cervical cancer is a significant health problem in this community and
elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South
Africans have not been educated about cervical cancer and the importance
of obtaining screening. Many may not consider screening a priority in
their lives. Our research included extensive consultations and informal
interviews with diverse community and regional stakeholders. Following
these, we conducted 27 focus groups and 106 demographic surveys with
randomly selected youth, parents, local health care personnel, educators
and school staff. Focus group data were summarized and analyzed
cross-sectionally. Community stakeholders were involved throughout this
research. Our consultations, interviews, and focus group data were key
in identifying the concerns and priorities of the community. By engaging
community stakeholders, we developed a research framework that
incorporated the community's concerns and priorities, and stressed the
intersecting roles of poverty, violence, and other cultural forces in
shaping community members' health and wellbeing. Community members
helped to refocus our research from cervical cancer to 'cervical
health,' a concept that acknowledged the impact on women's bodies and
lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple
social problems. We conclude that the research agenda and questions in
community-based health research should not be considered immutable. They
need to be open to negotiation, creativity, and constant reinvention.
(c) 2005 Elsevier Ltd. All rights reserved.
15. Nyden, P. (2003). Academic Incentives for Faculty Participation in
Community-based Participatory Research. _Journal of General Internal
Medicine_, 18(7), 576-585.
Recognizing the need to overcome the obstacles of traditional
university- and discipline-oriented research approaches, a variety of
incentives to promote community-based participatory research (CBPR) are
presented. Experiences of existing CBPR researchers are used in
outlining how this methodological approach can appeal to faculty: the
common ground shared by faculty and community leaders in challenging the
status quo; opportunities to have an impact on local, regional, and
national policy; and opening doors for new research and funding
opportunities. Strategies for promoting CBPR in universities are
provided in getting CBPR started, changing institutional practices
currently inhibiting CBPR, and institutionalizing CBPR. Among the
specific strategies are: development of faculty research networks; team
approaches to CBPR; mentoring faculty and students; using existing
national CBPR networks; modifying tenure and promotion guidelines;
development of appropriate measures of CBPR scholarship; earmarking
university resources to support CBPR; using Institutional Review Boards
to promote CBPR; making CBPR-oriented faculty appointments; and creating
CBPR centers.
16. O'Fallon, L. R., & Dearry, A. (2001). Commitment of the national
institute of environmental health sciences to community-based
participatory research for rural health. _Environmental Health
Perspectives_, 109(Suppl 3), 469-473.
The National Institute of Environmental Health Sciences (NIEHS) is the
leading biomedical research institution in the United States whose
mission is to support research that seeks to understand how
environmental exposures affect human health. NIEHS possesses a
longstanding interest in the health effects of agrochemical and other
environmental exposures in rural America, including pesticides, to
farmers and their families and to migrant farmworkers and their
families. In recent years. NIEHS has begun augmenting traditional basic
science investigations with innovative programs that translate findings
from the laboratory to affected populations. It is through
community-based participatory research that NIEHS strives to advance the
public health field by fostering the development of culturally relevant
interventions that will reduce exposures to environmental contaminants
and the risk of environmentally induced disease. In this article, we
describe the translational research program at NIEHS as it relates to
the NIEHS mission and highlight activities pertinent to the health of
rural communities, especially underserved populations. We provide an
overview of NIEHS-supported projects addressing health concerns of
Native American and rural African-American communities in addition to
farmworkers. We conclude with a discussion of future plans for
community-based participatory research at NIEHS.
17. Schulz, A. J., Israel, B. A., & Lantz, P. (2004). "Assessing and
Strengthening Characteristics of Effective Groups in Community-Based
Participatory Research Partnerships". In C. D. Garvin, L. M. Gutierrez
&M. J. Galinsky (Eds.), _Handbook of Social Work with Groups_ (pp.
309-325). New York: Guilford Press.
(from the chapter) In this chapter, the authors examine the literature
on group dynamics and discuss implications for understanding and
evaluating those dynamics within community-based participatory research
partnerships. Included is a discussion of the development and adaptation
of an instrument that can be used to evaluate group dynamics within
community-based participatory research partnerships. The chapter closes
with a discussion of the potential, challenges, and areas for further
investigation in the evaluation of partnership group dynamics and the
use of such assessments to facilitate ongoing partnership enhancement.
The authors' experience has been with partnerships that address the
implications of inequalities for public health, and the examples drawn
upon reflect that experience. However, the methods and instruments
discussed are readily applicable to community-based participatory
research partnerships that address a broad range of issues.
18. Spigner, C. (1999). African Americans, democracy, and biomedical and
behavioral research: Contradictions or consensus in community-based
participatory research? _International Quarterly of Community Health
Education_, 19(3), 259-284.
Individualism, in both its political and attitudinal senses, reinforces
societal and institutional racism in the United States. Because of
individualism's dominant focus on self-interest and self-reliance, any
application of "participatory democracy" in community-based biomedical
and behavioral research is fraught with dilemmas similar to those that
Gunnar Myrdal observed between American racism and democracy. The
research establishment is overwhelmed by well-meaning non-minorities who
recognize racism and its consequences in health, but only greater
representation of people-of-color in the health establishment can
ameliorate the inherent contradictions of "participatory democracy"
which is so fundamental to the process of community-based participatory
research.
19. Srinivasan, S., & Collman, G. W. (2005). Evolving partnerships in
community. _Environmental Health Perspectives_, 113(12), 1814-1816.
In recent years there have been a significant number of publications on
the benefits and challenges of community-based participatory research
(CBPR). In this introduction we give an overview of three projects
presented in this mini-monograph and highlight their commonalities and
differences in developing community-university partnerships. While the
studies presented here were not required to use CBPR strategies in their
work, they did engage community members in a participatory manner. In
this mini-monograph we examine how these multifaceted research questions
are addressed while simultaneously negotiating complex relationships
among researchers and communities as they strive for a more equitable
partnership-not only in the distribution of resources but also in
power/authority, the process of research, and its outcome. The three
papers in this mini-monograph offer insights into various ways of
forming, working, and sustaining community-university partnerships in
conducting CBPR. They illustrate both the potential benefits and some of
the challenges involved with establishing partnerships between community
groups and researchers committed to the mutual goal of promoting
environmental health. They suggest the importance of nonprescriptive
frameworks for conducting community-based participatory research that
focuses on more equitable power relationships to address health
disparities to help alleviate environmental health problems.
20. Watts, V. M., Christopher, S., Streitz, J. L., & McCormick, A.
(2005). Evaluation of a lay health adviser training for a
community-based participatory research project in a native American
community. _American Indian Culture and Research Journal_, 29(3), 59-79.
21. Weed, D. L., & McKeown, R. E. (2003). Science and social
responsibility in public health. _Environmental Health Perspectives_,
111(14), 1804-1808.
Epidemiologists and environmental health researchers have a joint
responsibility to acquire scientific knowledge that matters to public
health and to apply the knowledge gained in public health practice. We
examine the nature and source of these social responsibilities, discuss
a debate in the epidemiological literature on roles and
responsibilities, and cite approaches to environmental justice as
reflective of them. At one level, responsibility refers to
accountability, as in being responsible for actions taken. A deeper
meaning of responsibility corresponds to commitment to the pursuit and
achievement of a valued end. Epidemiologists are committed to the
scientific study of health and disease in human populations and to the
application of scientific knowledge to improve the public's health.
Responsibility is also closely linked to reliability. Responsible
professionals reliably perform the tasks they set for themselves as well
as the tasks society expects them to undertake. The defining axiom for
our approach is that the health of the public is a social good we commit
ourselves to pursue, thus assuming an obligation to contribute to its
achievement. Epidemiologists cannot claim to be committed to public
health as a social good and not accept the responsibility of ensuring
that the knowledge gained in their roles as scientists is used to
achieve that good. The social responsibilities of environmental health
researchers are conspicuous in the environmental justice movement, for
example, in community-based participatory research. Responsibility is an
ethical concept particularly well suited to frame many key aspects of
the ethics of our profession.
|
|
 |
|
