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ICR Abstracts: 4.2
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The Institute for Community Research
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Feb 22, 2006 12:04 PST
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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 (4.2: February 22, 2006)
1. Boyer, B. B., Mohatt, G. V., Lardon, C., Plaetke, R., Luick, B. R.,
Hutchison, S. H., et al. (2005). Building a community-based
participatory research center to investigate obesity and diabetes in
Alaska Natives. _International Journal of Circumpolar Health_, 64(3),
281-290.
The Center for Alaska Native Health Research (CANHR) is a
community-based participatory research project aimed at understanding
current risk factors for obesity, diabetes, and cardiovascular disease
in Alaska Natives living in Southwest Alaska. We utilize a
multidisciplinary approach that includes assessment of genetic,
nutritional and behavioral risk factors and their interrelationships
with one another in the overall development of disease. The design of
the CANHR project involved community participation in the development,
implementation and interpretation of research results. We have developed
a participatory research program that is designed to be culturally
appropriate, relevant to community needs and interests, and respectful
to our participants. This manuscript describes the organizational
development of our CANHR study and the procedures employed in its
progression to date.
2. Burton, D., Fahs, M., Chang, J. L., Qu, J., Chan, F., Yen, F., et al.
(2004). Community-based participatory research on smoking cessation
among Chinese Americans in Flushing, Queens, New York City. _Journal of
Interprofessional Care_, 18(4), 443-445.
The article presents a short report on community-based participatory
research on smoking cessation among Chinese Americans in Flushing,
Queens, New York City. In the first phase of the present study,
household interviews in Chinese languages of 2,537 adults ages 18-74 in
Flushing, Queens and Sunset Park, Brooklyn found a smoking rate of 30.3%
for men. Six focus groups with men in Flushing, Queens who smoke, three
conducted in Mandarin and three in Cantonese, revealed a low level of
awareness of approaches to quitting smoking and where to go for
assistance in quitting. Both the household survey and focus groups found
a low level of knowledge about the health consequences of smoking. To
determine if a community mobilization for smoking cessation has taken
place, four waves of field data are being collected in Flushing during
the 18-month intervention period; baseline data were collected
immediately before the intervention launch in October 2003, and the
first post-intervention data collection was completed in April 2004. The
field data collection will permit an assessment of the extent to which
community mobilization contributes to any smoking cessation observed in
the second household interview survey to be conducted at the end of the
18-month intervention.
3. Caldwell, J. Y., Davis, J. D., Du Bois, B., Echo-Hawk, H., Erickson,
J. S., Goins, R. T., et al. (2005). Culturally competent research with
American Indians and Alaska Natives: Findings and recommendations of the
First Symposium of the Work Group on American Indian Research and
Program Evaluation Methodology. _American Indian and Alaska Native
Mental Health Research_, 12(1), 1-21.
This article describes the collective experience of a multidisciplinary
network of researchers, practitioners, and program evaluators who
support appropriate research and evaluation methods in working with
Native peoples. Our experience underlines the critical importance of
culture in understanding and conducting research with the diverse
populations of American Indians and Alaska Natives, and documents the
need for community-based, collaborative, participatory action research.
We discuss the major findings of the first American Indian Research and
Program Evaluation Methodology national symposium, and articulate a set
of 20 guiding principles for conducting research and program evaluation.
4. Canterbury, D. C. (2003). Community development through community
non-wage benefits in Guyana's mineral sector. _Revue Canadienne d'
Etudes du Developpement-Canadian Journal of Development Studies_, 24(2),
303-318.
Neo-liberalism advocates theoretical and methodological approaches to
community-based participatory research and development that are
value-laden and liberal democratic. However, community-based development
in the Guyanese gold and bauxite mining communities through community
non-wage benefits is anything but liberal democratic. The social
relations in these communities are microcosms of the class, race, and
gender inequalities endemic in capitalist societies. These inequalities
reflect the political and economic domination of workers by those who
own and/or control the productive forces. Social unrest among the
workers, however, pressures mining firms to improve the community
non-wage benefits they supply. An alternative people-centred and
bottom-up approach to community-based participatory development is
needed to empower the inhabitants in the gold and bauxite mining
communities.
5. Clements-Nolle, K., & Bachrach, A. (2003). "Community based
participatory research with a hidden population: The Transgender
Community Health Project". In M. Minkler &N. Wallerstein (Eds.),
_Community Based Participatory Research for Health_ (pp. 332-343). San
Francisco: Josey-Bass.
(from the chapter) This chapter describes how community based
participatory research (CBPR) was successfully used in an
epidemiological study with perhaps the most socially marginalized
population in the US: the transgender community. After a brief
introduction to this hidden population and a summary of the study
results, the authors illustrate how CBPR guided the development and
implementation of their research efforts. This case study is framed
within CBPR principles: community based participatory research is
participatory, is cooperative, is a co-learning process, involves system
development, is an empowering process through which participants can
increase control over their lives, and achieves a balance between
research and action. This chapter concludes with recommendations for
other researchers who wish to use CBPR to conduct research with other
marginalized and hidden populations.
6. Dobinson, C., MacDonnell, J., Hampson, E., Clipsham, J., & Chow, K.
(2005). Improving the Access and Quality of Public Health Services for
Bisexuals. _Journal of Bisexuality_, 5(1), 39-78.
This position paper arises as a result of the 2000 OPHA position paper
"Improving the Access to and Quality of Public Health Services for
Lesbians and Gay Men" submitted by the Public Health Alliance for LGBTIQ
Equity workgroup. In that paper, the authors note that they are unable
to adequately represent the issues of bisexual people and in order to
respect the differences between gay men, lesbians and bisexuals they
include a resolution that the OPHA support the development of a
community based research project and position paper specifically
focussing on issues of accessibility and health services needs for
bisexuals. Existing research and literature on bisexuality and health
has focussed primarily on two topics: HIV/AIDS and mental health,
therapy or counselling. Those wishing to find information on other
aspects of bisexual health and wellness must sort through the sea of
research and writing on gay, lesbian and bisexual health to try to find
any bits and pieces that specifically address bisexuals. Even in
research where bisexuals are included they are usually not adequately
represented and not looked at separately. Although sharing some common
concerns with both gay/lesbian and heterosexual persons, bisexuals also
have specific experiences and needs regarding health and wellness that
need to be researched and addressed. This paper outlines a wide range of
these specific experiences and needs based on the results of a community
consultation that was undertaken with bisexual communities and
individuals in Ontario, in conjunction with the relevant literature.
This is a community based participatory action research (PAR) project,
which means it is designed for education and action, to work with and
empower the people and communities involved in the project. The goal is
to improve the access to and quality of public health services for
bisexuals by gathering information from bisexuals themselves about their
health and wellness needs and experiences, existing gaps in health care
services, as well as the barriers they face with regard to meeting these
needs and obtaining appropriate services and support. Between
January-March 2003, 5 focus groups (4 in Toronto and 1 in Ottawa) and 43
individual semi-structured interviews were conducted for a total of 62
participants from across Ontario. People identifying as bisexual as well
as those who have sex with both men and women but don't necessarily
identify as bisexual were invited to participate in this project. The
first section of the community consultation results addresses the social
context of bisexual lives including unique issues facing bisexuals,
relationships, social support, LGBT and bisexual community involvement,
and specific issues for older bisexuals, youth, bisexuals of diverse
cultures and trans people. The second section focuses on health and
wellness issues such as disclosure to health care providers, experiences
using services (including LBGT services), barriers to care and
suggestions for change. The paper concludes with recommendations for
action in the areas of additional research, service and program
development designed to include bisexuals, public education, and
education for providers on the diversity, complexity and wholeness of
bisexual people as well as resources and referrals pertaining to
bisexuality.
7. Fadem, P., Minkler, M., Perry, M., Blum, K., Moore, L., & Rogers, J.
(2003). "Ethical challenges in community based participatory research: A
case study from the San Francisco Bay Area disability community". In M.
Minkler &N. Wallerstein (Eds.), _Community Based Participatory Research
for Health_ (pp. 242-262). San Francisco: Josey-Bass.
(from the chapter) The community based participatory research (CBPR)
project described in this chapter was designed to uncover the attitudes
of people with disabilities toward a particularly polarizing issue in
their community--death with dignity legislation, or physician-assisted
suicide. To provide a context for understanding the ethical issues that
arose in this study, background on death with dignity legislation and
the debate within the disability community over this issue is provided.
Then, the authors describe the genesis, goals, methods, and results of
this CBPR project. Most of the chapter is then devoted to an examination
of four of the key ethical dilemmas that emerged in the course of the
project, all of which have relevance for people engaged in CBPR efforts:
questions around issue selection when a community is deeply divided over
a problem, inclusion and exclusion in both university research team
makeup and sample selection, issues of power and misunderstanding
related to the insider or outsider status of team members, and how best
to use findings in ways that can unite and strengthen the community
rather than weaken and further divide it.
8. Hadjipateras, A. (2004). "Unravelling the dynamics of
HIV/AIDS-related stigma and discrimination: The role of community-based
research. Case studies of northern Uganda and Burundi". (Research Report
Series No. 1). London, England: Agency for Co-Operation and Research
Development [ACORD], HIV and AIDS Support and Advocacy Programme
[HASAP].
In line with ACORD’s mission based on the fundamental belief that
communities should be the leading actors in the struggle for social
justice and equity, the basic premise underlying these initiatives is
the view that responses and strategies for tackling stigma and
discrimination must be built on communities’ own understanding of the
problems and be guided by the solutions they propose. Thus, in addition
to identifying the manifestations and consequences of HIV/AIDS-related
stigma and discrimination on individuals, families and communities in
countries hard hit by the epidemic, an equally, if not more important
aim of the research was to engage communities in a process of critical
analysis and reflection leading to community-driven action and advocacy
for change. The two country case studies were carried out in Northern
Uganda and Burundi as part of ACORD’s work aimed more broadly at
promoting sustainable peace and development through supporting
peacebuilding and conflict resolution initiatives, as well as working to
alleviate poverty and improve the livelihoods of the most vulnerable
groups in society. Responding to HIV/AIDS is a fundamental part of the
work of ACORD in both countries. Thus, this research was aimed at
strengthening ACORD’s work as well as supporting national efforts to
address the effects of the HIV/AIDS epidemic. (excerpt)
Full text online: http://www.synergyaids.com/documents/Accord_stigma.pdf
9. Israel, B. A., Parker, E. A., Rowe, Z., Salvatore, A., Minkler, M.,
Lopez, J., et al. (2005). Community-based participatory research:
Lessons learned from the Centers for Children's Environmental Health and
Disease Prevention Research. _Environmental Health Perspectives_,
113(10), 1463-1471.
Over the past several decades there has been growing evidence of the
increase in incidence rates, morbidity, and mortality for a number of
health problems experienced by children. The causation and aggravation
of these problems are complex and multifactorial. The burden of these
health problems and environmental exposures is borne disproportionately
by children from low-income communities and communities of color.
Researchers and funding institutions have called for increased attention
to the complex issues that affect the health of children living in
marginalized communities-and communities more broadly and have suggested
greater community involvement in processes that shape research and
intervention approaches, for example, through community-based
participatory research (CBPR) partnerships among academic, health
services, public health, and community-based organizations. Centers for
Children's Environmental Health and Disease Prevention Research
(Children's Centers) funded by the National Institute of Environmental
Health Sciences and U.S. Environmental Protection Agency, were required
to include a CBPR project. The purpose of this article is to provide a
definition and set of CBPR principles, to describe the rationale for and
major benefits of using this approach, to draw on the experiences of six
of the Children's Centers in using CBPR, and to provide lessons learned
and recommendations for how to successfully establish and maintain CBPR
partnerships aimed at enhancing our understanding and addressing the
multiple determinants of children's health.
10. Jackson, F. M., Hogue, C. R., & Phillips, M. T. (2005). The
development of a race and gender-specific stress measure for
African-American women: Jackson, Hogue, Phillips contextualized stress
measure. _Ethnicity & Disease_, 15(4), 594-600.
Objective: Community-based research was conducted to develop an identity
stress measure for African-American women. The aim of the investigation
was to capture the voices of African-American women telling their
experiences of stress and support and to have their voices inform the
development of an identity stress measure representing the realities of
being Black and female. in this paper, we describe the components of a
race and gender-specific stress measure emerging from a
multidisciplinary iterative process that employed qualitative and
quantitative methods. Method: The research was initiated by focus groups
and interviews where women were asked to share their experiences of
stress and support. Four hundred seventy-four (474) African-American
women from the metropolitan Atlanta area collaborated in the study by
participating in one or more phases of the research. Content analysis of
the qualitative data informed the development of a 71-item race and
gender-specific stress measure for African -American women. The scale
and a battery of validity measures (Spielburger Anger and Anxiety, John
Henryism, and NHIS-depression) were administered twice over a 30-day
period followed by group discussions and interviews. Results: Content
and factor analysis resulted in the development of six subscales:
racism, burden, personal history, work, support/coping, and stress
states. The measure has been validated with established measures of
anger, anxiety, depression. Significant correlations were established
for all of the stress subscales and measures of anger (trait anger,
anger-in, anger-out, and anger expression). Findings indicate
significant correlations for the burden subscale and anger-in (r=.33,
<.01) and stress states and trait anxiety (r=.57, <.01).
11. Krieger, J., Allen, C., Cheadle, A., Ciske, S., Schier, J. K.,
Senturia, K., et al. (2002). Using community-based participatory
research to address social determinants of health: Lessons learned from
Seattle Partners for Health Communities. _Health Education & Behavior_,
29(3), 361-382.
Seattle Partners for Healthy Communities (SPHC) is a multidisciplinary
collaboration of community agencies, community activists, public health
professionals, academics, and health providers who conduct research
aimed at improving the health of urban, socioeconomically marginalized
Seattle communities. SPHC uses a community-based participatory research
approach to address social factors that affect the health of these
communities. This article describes three SPHC projects that focus on
social determinants of health, particularly the development of social
support and improving housing quality. The characteristics of community
participation in each of these projects are discussed and show a
spectrum of participation. Although projects successfully addressed
proximal social factors affecting health, influencing more distal
underlying factors was more difficult. Implications for researchers
using a community-based participatory research approach and public
health practitioners seeking to engage communities in addressing social
determinants of health are presented.
12. Maciak, B. J., Guzman, R., Santiago, A., Villalobos, G., & Israel,
B. A. (1999). Establishing LA VIDA: A community-based partnership to
prevent intimate violence against Latina women. _Health Education &
Behavior_, 26(6), 821-840.
LA VIDA--the Southwest Detroit Partnership to Prevent Intimate Violence
Against Latino Women evolved in response to community concern about the
problem of intimate partner violence (IPV) and the lack of culturally
competent preventive and support services for Latino women and men in
southwest Detroit. Since 1997, diverse organizations have mobilized as a
community-academic partnership to ensure the availability,
accessibility, and utilization of IPV services. This article describes
and analyzes the evolution of LA VIDA within a community-based
participatory research framework using a case study approach that draws
on multiple data sources including group and individual interviews and
field notes. The challenges and lessons learned in addressing a complex
multifaceted problem such as IPV in an ethnic minority community are
highlighted in an examination of the process of mobilizing diverse
organizations, conducting community diagnosis and needs assessment
activities, establishing goals and objectives within a social ecological
framework, and integrating evaluation during the development phase.
13. Marcus, M. T., Walker, T., Swint, J. M., Smith, B. P., Brown, C.,
Busen, N., et al. (2004). Community-based participatory research to
prevent substance abuse and HIV/AIDS in African-American adolescents.
_Journal of Interprofessional Care_, 18(4), 347-359.
Adolescence is a time for exploration and risk-taking; in today's urban
environment, with the twin threats of substance abuse and HIV/AIDS, the
stakes are particularly high. This paper describes a community-based
participatory research project to design, implement, and evaluate a
faith-based substance abuse and HIV/AIDS prevention program for
African-American adolescents. A coalition of university-based
investigators and African-American church member stakeholders
collaborated on all aspects of Project BRIDGE, the 3-year intervention
to reduce substance abuse and HIV/AIDS in African-American adolescents.
Our results support the use of community-based participatory research to
create desirable change in this setting. Adolescents who participated in
Project BRIDGE reported significantly less marijuana and other drug use
and more fear of AIDS than a comparison group. Project BRIDGE has been
designated an official ministry of the church and the program has been
extended to others in the larger metropolitan community. The church now
has a well-trained volunteer staff University faculty developed skills
in negotiating with community-based settings. The coalition remains
strong with plans for continued collaborative activities.
14. McQuiston, C., Parrado, E. A., Martinez, A. P., & Uribe, L. (2005).
Community-based participatory research with Latino community members:
Horizonte Latino. _Journal of Professional Nursing_, 21(4), 210-215.
As the demographic makeup of the United States undergoes rapid
transformation, the importance of studying ethnic and cultural
variations between and within population subgroups becomes increasingly
clear. Researchers must challenge themselves to move beyond simply
matching their methodology to the research question at hand and seek out
methods that are compatible with the culture, language, traditions, and
particular life circumstances of the cultural group under study.
Community-based participatory research is collaborative and includes
community members as participants in the research process, which ensures
the cultural and community specificity of the research. This article
demonstrates how experiential learning of community members as research
participants provided culturally grounded insights used in grant
writing. The experiences and involvement of the community researchers
shaped the research questions and provided the major conceptual basis in
response to a National Institutes of Health Request for Applications.
15. Oneha, M. F., & Oneha, M. F. M. i. (2004). The 'place' of data.
_Pacific Health Dialog_, 11(2), 204-208.
Health disparities research has been at the forefront for many
researchers, organizations, and funding agencies. Collecting,
interpreting, and disseminating data on particular disparate populations
are at the core of this research process, data which have been
interpreted to be meaningful to the benefit of and use by communities.
The purpose of this paper is to explore the question, "How is data
used?" with an appreciation for indigenous beliefs and community based
research. An analogy, from the perspective of "place," will be used to
illustrate how data is used through various levels of commitment or
belonging one has to a particular place. Recommendations on the
collection, interpretation and dissemination of data from this
perspective conclude this paper.
16. Sanders, L. M., Robinson, T. N., Forster, L. Q., Plax, K., Brosco,
J. P., & Brito, A. (2005). Evidence-based community pediatrics: Building
a bridge from bedside to neighborhood. _Pediatrics_, 115(4), 1142-1147.
The American Academy of Pediatrics policy statement "The Pediatrician's
Role in Community Pediatrics" encourages all pediatricians to partner
with their communities to create and disseminate innovative programs
that improve child health. This article describes 4 pillars of a bridge
to evidence-based community pediatrics for pediatricians interested in
pursuing effective community action: (1) collaborate with the community
to establish a specific, short-term, health-related goal; (2) identify
evidence-based best practice(s) for achieving the shared goal; (3)
collaborate with the community to adapt this best practice to the
community's unique assets and constraints; and (4) evaluate the project
by using appropriate expertise. Practical elements of each pillar are
described and illustrated by specific examples from community-based
efforts of pediatricians and are accompanied by specific resources to
aid pediatricians in their future community health work.
17. Schulz, A. J., Kannan, S., Dvonch, J. T., Israel, B. A., Allen, A.,
James, S. A., et al. (2005). Social and physical environments and
disparities in risk for cardiovascular disease: The Healthy Environments
Partnership conceptual model. _Environmental Health Perspectives_,
113(12), 1817-1825.
The Healthy Environments Partnership (HEP) is a community-based
participatory research effort investigating variations in cardiovascular
disease risk, and the contributions of social and physical environments
to those variations, among non-Hispanic black, non-Hispanic white, and
Hispanic residents in three areas of Detroit, Michigan. Initiated in
October 2000 as a part of the National Institute of Environmental Health
Sciences' Health Disparities Initiative, HEP is affiliated with the
Detroit Community-Academic Urban Research Center. The study is guided by
a conceptual model that considers race-based residential segregation and
associated concentrations of poverty and wealth to be fundamental
factors influencing multiple, more proximate predictors of
cardiovascular risk. Within this model, physical and social environments
are identified as intermediate factors that mediate relationships
between fundamental factors and more proximate factors such as physical
activity and dietary practices that ultimately influence anthropomorphic
and physiologic indicators of cardiovascular risk. The study design and
data collection methods were jointly developed and implemented by a
research team based in community-based organizations, health service
organizations, and academic institutions. These efforts include
collecting and analyzing airborne particulate matter over a 3-year
period; census and administrative data; neighborhood observation
checklist data to assess aspects of die physical and social environment;
household survey data including information on perceived stressors,
access to social support, and health-related behaviors; and
anthropometric, biomarker, and self-report data as indicators of
cardiovascular health. Through these collaborative efforts, HEP seeks to
contribute to an understanding of factors that contribute to racial and
socioeconomic health inequities, and develop a foundation for efforts to
eliminate these disparities in Detroit.
18. Sullivan, M., Bhuyan, R., Senturia, K., Shiu-Thornton, S., & Ciske,
S. (2005). Participatory action research in practice: A case study in
addressing domestic violence in nine cultural communities. _Journal of
Interpersonal Violence_, 20(8), 977-995.
Participatory action research (PAR) is increasingly recognized as a
viable approach to developing relationships with communities and working
closely with them to address complex public health problems. In the case
of domestic violence research, where ensuring the safety of women
participants who are battered is paramount, participatory approaches to
research that include advocates and women who are battered in research
design, implementation, analysis, and dissemination are critical to
successful and mutually beneficial projects. This article presents a
case study of a PAR project that conducted formative qualitative
research on domestic violence in nine ethnic and sexual minority
communities. The article describes the specific ways in which a PAR
approach was operationalized and discusses in detail how community
participation shaped various stages of the research. Furthermore,
specific actions that resulted from the research project are reported.
19. Torres, M. A., & Banerjee, S. (2003). Using untapped resources. An
expanded concept of infrastructure for community-based ARV advocacy.
_Sexual Health Exchange_, 3(3), 10-12.
There are some 40 million people living with HIV in the world, and yet
only a tiny fraction receives life-sustaining antiretroviral treatments.
Access to care, treatment and support is thus a central focus of
advocacy efforts. Drug pricing, in particular, has been taken up by the
advocacy community resulting in recent decreases in the cost of ARVs.
However, cost and availability are not the only determinants of access.
A study conducted by ICASO in 2002 identified several other barriers to
access ARV treatment, notably related to the issue of infrastructure.
The results of this exploratory, community-based research point towards
the outline of an expanded framework of infrastructure that could
provide a solid foundation for accessing ARVs. (excerpt)
20. Washington, A. E., Napoles-Springer, A., Forte, D. A., Alexander,
M., & Perez-Stable, E. J. (2002). Establishing centers to address
treatment effectiveness in diverse ethnic groups: The MEDTEP experience.
_Ethnicity & Health_, 7(4), 231-242.
OBJECTIVE: To investigate racial, ethnic, and socioeconomic disparities
in health outcomes amenable to improvement through more effective
delivery of health care services. DESIGN: The Medical Treatment
Effectiveness Program (MEDTEP) Research Centers on Minority Populations
were a group of centers in the USA funded to improve the effectiveness
of medical diagnosis and treatment, to provide technical assistance to
ethnic minority health researchers, to train new researchers, and to
disseminate information to help ethnic minority patients and their
health care providers. RESULTS: Centers often provided many specific
findings related to assessment of the magnitude of disparities in health
outcomes and to approaches for eliminating these outcomes. The Centers
were able to build community partnerships using an approach now defined
as community-based participatory research. Centers changed the culture
of their institutions by making them more aware of the need to train
diverse investigators and do more to eliminate health disparities.
CONCLUSION: A key to the success of the Centers has been the unification
of a cadre of committed investigators dedicated to the mentoring of
minority health researchers and to the elimination of ethnic and
socioeconomic disparities in health. The MEDTEP Centers provide a model
but there remains a need for continued work.
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