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ICR Abstracts: 4.10
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Helena
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Oct 10, 2006 12:00 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 (4.10: October 10, 2006)
1. Anderko, L., S. Lundeen, et al. (2006). The Midwest Nursing Centers
Consortium Research Network: Translating research into practice.
_Policy, Politics, & Nursing Practice_, 7(2), 101-9.
Community nursing centers (CNCs) serve the health needs of culturally
diverse populations that are often marginalized and likely to experience
disparities in health. CNCs utilize innovative models of primary health
care that blend traditional medical management with nursing case
management and community-based health promotion strategies. This article
describes the mission and activities of the Midwest Nursing Centers
Consortium Research Network (MNCCRN), a practice-based research network
(PBRN) funded by the Agency for Healthcare Research and Quality, and is
one of only two federally funded nonphysician primary care PBRNs and the
only PBRN in the United States comprising exclusively CNCs. The MNCCRN
utilizes Advanced Practice Nurses to deliver primary health care with a
particular emphasis on reducing health disparities. The MNCCRN has
successfully established a multisite, multistate collaboration for
community-based participatory research that will ultimately inform
practice, education, and health policy.
2. Baptiste, D. R., A. Bhana, et al. (2006). Community Collaborative
Youth-Focused HIV/AIDS Prevention in South Africa and Trinidad:
Preliminary Findings. _Journal of Pediatric Psychology_ 31(9), 905-916.
Background South Africa and Trinidad and Tobago are disproportionately
impacted by high rates of HIV/AIDS among adolescents. Objective The
article describes the HIV crises in these countries; outlines a
community participatory research framework to adapt and deliver
family-based prevention; and presents preliminary data from intervention
pilots in each setting. Methods Adapted interventions were piloted with
N = 140 families in South Africa and N=16 families in Trinidad and
Tobago to refine recruitment and retention efforts and to assess the
adapted interventions' impact on family and risk-related constructs.
Results Both settings reported promising results including high
recruitment and retention and favourable pre to post changes in
parent/youth frequency and comfort in talking about sensitive subjects,
HIV transmission knowledge and attitudes about persons with HIV/AIDS.
Conclusion International HIV-prevention alliances are increasing. Such
alliances are challenged by trust issues, power-differentials and
ideological differences. Recommendations are provided on how some
challenges can be overcome.
3. Chung, K. and D. W. Lounsbury. (2006). The role of power, process,
and relationships in participatory research for statewide HIV/AIDS
programming. _Social Science & Medicine_, 63(8), 2129-40.
This paper presents a case study of a participatory process that was
used to understand the needs of persons living with HIV/AIDS in a US
state. The case illustrates that participation in a community-based
research project is a dynamic phenomenon that must be negotiated among
an evolving web of roles and relationships. Using a continuum to model
the multiple modes of community participation, we follow the changing
nature of participation over the course of a single project. Our
analysis illustrates the different levels of participation given by the
continuum as well as the dynamic nature of participation. A shared
understanding of participation evolves as the roles and relationships of
those involved are negotiated and renegotiated. However, lack of
reflection over power differentials can lead to disempowering outcomes
even after achieving a seemingly participatory process. The case reveals
that failing to resolve divergent assumptions about power and purpose
can lead to fissures that are difficult to overcome.
4. Haalboom, B. J., K. L. Robinson, et al. (2006). Research as
intervention in heart health promotion. _Canadian Journal of Public
Health_, 97(4), 291-5.
BACKGROUND: Capacity building in health promotion has traditionally
involved training interventions to support knowledge, skill and resource
building for effective practice. However, there is a need to understand
how research can be used to support capacity building and practice.
METHODS: Findings are based on a parallel case study comprising
qualitative analysis of 66 key informant interviews from five provincial
heart health projects (Manitoba, Prince Edward Island, Ontario,
Saskatchewan, and Newfoundland and Labrador) as part of the Canadian
Heart Health Dissemination Project. FINDINGS: Results indicate research
was used primarily to monitor and report results about health promotion
capacity and dissemination to stakeholders, and contribute to
participatory processes. Respondents noted that research as intervention
had an influence on five areas of health promotion capacity and
practice: increased heart health promotion knowledge/skills; improved
programming, planning and prioritizing; increased motivation for (heart)
health promotion initiatives; and cultivation of relationships as well
as buy-in. INTERPRETATION: Research was a complementary
capacity-building activity, although it did not directly increase
program implementation. These findings contribute to linking
researchers, practitioners and community decision-makers in the process
of enhancing health promotion practice.
5. Hughes Halbert, C., 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.
6. Jenkin, P., T. Koch, et al. (2006). The experience of fatigue for
adults living with HIV. _Journal of Clinical Nursing_, 15(9), 1123-31.
AIMS: The aim of this study was to go beyond objective clinical
assessment and explore the experience of fatigue and self-care
strategies with adults who live with HIV. RATIONALE: This study
responded to a perceived lack of available evidence to inform the
practice of service providers about ways fatigue impacts on the lives of
people with HIV. Prior understandings of fatigue are derived from survey
or instrument-based tools or studies that do not consider the
complexities of the personal experience that in-depth interviews can
elicit. The focus remains generally on description, measurement or
management from a biomedical perspective. METHODS: A qualitative study
using participatory action research methods was conducted during 2003
with 15 adults diagnosed with HIV who perceived fatigue was a problem in
their lives. Data were collected by individual interviews, researcher's
notes and two participatory action research groups. RESULTS: Thematic
analysis of data demonstrated that fatigue remains silent and invisible
to participant's families, friends and employers. Fatigue experienced by
people living with HIV generally also met with a lack of acknowledgement
and understanding from health professionals. People developed self-care
strategies over many years of trial and error. RELEVANCE TO CLINICAL
PRACTICE: People living with a HIV seek to be acknowledged that fatigue
is a legitimate concern, not only by health care professionals, but also
people with whom they live. It is imperative that nurses who work with
people living with HIV-related fatigue consider the wider social aspects
of the person's life as well as physical symptoms. Most importantly,
there then needs to be a process of engagement and active listening to
the individual's account of their experience of fatigue. Advocating that
fatigue is a legitimate complaint to the person living with HIV as well
as the wider public and professional community is imperative.
7. Kagawa-Singer, M., S. Park Tanjasiri, et al. (2006). Breast and
Cervical Cancer Control Among Pacific Islander and Southeast Asian
Women: Participatory Action Research Strategies for Baseline Data
Collection in California. _Journal of Cancer Education_, 21(1, suppl),
S53-S60.
Background. No data exists on the breast and cervical cancer screening
practices among Cambodian, Laotian, Thai, and Tongan women. In this
article, we describe the efforts required to conduct a baseline survey
among these non-English-speaking women using the participatory action
research (PAR) approach. Methods. We tailored small population sampling
techniques to each of the populations in partnership with Community
Health Outreach workers. Results. A total of 1825 surveys were
successfully conducted in 8 communities. Conclusion. PAR and the
culturally based techniques used to conduct the survey proved successful
in maintaining scientific rigor, developing true community-researcher
partnership, and achieving over 99% participation.
8. Leshabari, S. C., P. Koniz-Booher, et al. (2006). Translating global
recommendations on HIV and infant feeding to the local context: The
development of culturally sensitive counselling tools in the Kilimanjaro
Region, Tanzania. _Implementation Science_, 1(1), 22.
ABSTRACT: BACKGROUND: This paper describes the process used to develop
an integrated set of culturally sensitive, evidence-based counselling
tools (job aids) by using qualitative participatory research. The aim of
the intervention was to contribute to improving infant feeding
counselling services for HIV positive women in the Kilimanjaro Region of
Tanzania. METHODS: Formative research using a combination of qualitative
methods preceded the development of the intervention and mapped existing
practices, perceptions and attitudes towards HIV and infant feeding
(HIV/IF) among mothers, counsellors and community members. Intervention
Mapping (IM) protocol guided the development of the overall intervention
strategy. Theories of behaviour change, a review of the international
HIV/IF guidelines and formative research findings contributed to the
definition of performance and learning objectives. Key communication
messages and colourful graphic illustrations related to infant feeding
in the context of HIV were then developed and/or adapted from existing
generic materials. Draft materials were field tested with intended
audiences and subjected to stakeholder technical review. RESULTS: An
integrated set of infant feeding counselling tools, referred to as 'job
aids', was developed that includes brochures on feeding methods that
were found to be socially and culturally acceptable, a Question and
Answer Guide for counsellors, a counselling card on the risk of
transmission of HIV, and an infant feeding toolbox for demonstration.
Each brochure describes the steps to ensure safer infant feeding using
simple language and images based on local ideas and resources. The
brochures are meant to serve as both a reference material during infant
feeding counselling in the ongoing prevention of mother to child
transmission (pMTCT) of HIV programme and as take home material for the
mother. CONCLUSIONS: The study underscores the importance of formative
research and a systematic theory based approach to developing an
intervention aimed at improving counselling and changing customary
feeding practices. The identification of perceived barriers and
facilitators for change contributed to developing the key counselling
messages and graphics, reflecting the socio-economic reality, cultural
beliefs and norms of mothers and their significant others.
Full text online: http://www.implementationscience.com/content/1/1/22
9. Lichtenstein, R., J. Banaszak-Holl, et al. (2006). Training welfare
caseworkers in service excellence: Increasing children's Medicaid
coverage. _Journal of Health Care for the Poor & Underserved_, 17(3),
486-92.
Many low-income children who are eligible for public sector health
insurance remain uninsured. There are many barriers to enrolling these
children, but one key issue is parents' reluctance to use the services
of the local enrollment agency, which is usually the welfare office. The
Eastside Access Partnership, a community-academic coalition on the
Eastside of Detroit, addressed the problem of uninsured-but-eligible
children through a variety of interventions focused on (1) enhancing
community members' understanding of the enrollment process and (2)
reducing institutional barriers to enrollment. One of these
interventions addressed the institutional barriers by developing a
customer service excellence training program for welfare caseworkers.
The training program curriculum, which was developed following the
principles of community-based participatory research, included extensive
input from community residents, welfare agency staff, and academic
researchers. The training sessions received positive evaluations from
participants and agency executives. A more thorough evaluation of the
project is under way.
10. Mshana, G. H., J. Wamoyi, et al. (2006). Barriers to accessing
antiretroviral therapy in Kisesa, Tanzania: A qualitative study of early
rural referrals to the national program. _AIDS Patient Care & STDs_,
20(9), 649-57.
This community-based, qualitative study conducted in rural Kisesa
District, Tanzania, explores perceptions and experiences of barriers to
accessing the national antiretroviral programme among self-identified
HIV-positive persons. Part of wider operations research around local
introduction of HIV therapy, the study involved consultation with
villagers and documented early referrals' progress through clinical
evaluation and, if eligible, further training and drug procurement. Data
collection consisted of 16 participatory group discussions with
community members and 18 in-depth interviews with treatment-seekers.
Although participants welcomed antiretroviral therapy, they feared that
transportation and supplementary food costs, the referral hospital's
reputation for being unfriendly and confusing, and difficulties in
sustaining long-term treatment would limit accessibility. Fear of stigma
framed all concerns, posing challenges for contacting referrals who did
not want their status disclosed or expressed reluctance to identify a
"treatment buddy" as required by the programme. To mitigate logistical
barriers, transportation costs were paid and hospital visits
facilitated. Participants reported satisfaction with eligibility
testing, finding the process easier than anticipated. Most were willing
to join a support group and some changed attitudes toward disclosure.
However, both experienced and anticipated discrimination continue to
hinder widespread antiretroviral therapy (ART) uptake. While simple
measures to reduce perceived barriers improved initial access to
treatment and helped overcome anxiety among early referrals, pervasive
stigma remains the most formidable barrier. Encouraging successful
referrals to share their positive experiences and contribute to nascent
community mobililzation could start to address this seemingly
intractable problem.
11. Partin, M. R. (2006). A Challenging But Critical Endeavor:
Balancing Responsiveness and Rigor in Community-Based Participatory
Research. _Health Education & Behavior_, 33(5), 574-577.
12. Petersen, D., M. Minkler, et al. (2006). Community-based
participatory research as a tool for policy change: A case study of the
Southern California Environmental Justice Collaborative. _The Review of
Policy Research_, 23(2), 339-353.
In 2000, a regional rule governing maximum individual cancer risk from
stationary facilities in Southern California was dramatically altered,
reducing allowable risk levels by 75%. This article uses a case study
approach to explore the role of a community-based participatory research
(CBPR) partnership, the Southern California Environmental Justice
Collaborative, in producing research and helping spearhead policy
advocacy leading to this policy change. It also highlights the role of
the collaborative in helping to change the framing of the issue from
individual to cumulative risk assessment, so that the regulatory
agencies began to reflect this broader thinking in their policymaking.
The collaborative's structure and methodology, regional focus,
relationships with key decision makers, and its reputation as an
important source of both credible science and “people power” were seen
as contributing to its effectiveness. The role of contextual factors
including a recovering and more regulation-friendly economy also is
highlighted, as are key barriers faced. Implications for other
community–academic partnerships working to address regional and
statewide public policy are discussed.
13. Rhodes, S. D., L. J. Yee, et al. (2006). A community-based rapid
assessment of HIV behavioural risk disparities within a large sample of
gay men in southeastern USA: A comparison of African American, Latino
and white men. _AIDS Care_, 18(8), 1018-24.
Because the southeastern USA is experiencing a disproportionate HIV
infection rate compared to other regions of the country, we explored HIV
behavioural risk disparities by race/ethnicity among self-identifying
gay men. Conceived and implemented as a community-based participatory
research (CBPR) study, this rapid assessment collected demographic and
HIV risk-behaviour data from men in five gay bars in the northwestern
part of the state of North Carolina, using an assessment available in
English and Spanish. Of 719 participants, 34.8% reported inconsistent
condom use during anal intercourse in the past three months, 11.4%
reported ever having had a sexually transmitted disease (STD), 3.6%
reported being HIV-seropositive and 26% reported illicit drug use during
the past 30 days. Compared to white participants, African American/black
and Hispanic/Latino participants were more likely to report inconsistent
condom use during anal intercourse with multiple partners during the
past three months. African American/black participants were more likely
to report illicit drug use during the past 30 days. Hispanic/Latino
participants were more likely to have never been tested for HIV. Rates
of HIV risk behaviours among gay men remain high and racial/ethnic
differences indicate the need for targeted and tailored prevention
strategies.
14. Savage, C. L., Y. Xu, et al. (2006). A case study in the use of
community-based participatory research in public health nursing. _Public
Health Nursing_, 23(5), 472-8.
There is growing demand for research using a community-based
participatory (CBPR) approach. CBPR requires that the academic research
team actively partner with community members and stakeholders in the
entire research process. The community members are full partners with
the researchers in relation to the development and implementation of the
study, analysis of the data, and dissemination of the findings. The
purpose of this article is to review four basic principles of CBPR and
provide an example of how these CBPR principles were used in an
ethnographic study related to the culture of African American infant
health. In the pilot study, CBPR provided the framework for recruitment
and retention of participants, ongoing data analysis, and dissemination
of findings. Using CBPR provided the researchers an introduction into
the selected community. Community members served as key informants about
the culture of the community and provided access to potential
participants. The community partners contributed to analysis of emerging
themes and in the dissemination of findings to the community,
stakeholders, and the scientific community. CBPR provides opportunities
for community health nurse researchers to conduct research with
vulnerable populations and sets the stage for implementing
evidenced-based nursing interventions in the community.
15. Sharma, M. (2005). Using focus groups in community based
rehabilitation. _Asia Pacific Disability Rehabilitation Journal_ 16(1),
41-50.
The purpose of this study was to examine the method of focus group in
community-based rehabilitation. An intensive ten year search of Medline
database, revealed twenty six articles that had used focus group as
primary or secondary method and that pertained to rehabilitation in
community settings. The articles were categorized into five categories
based on how focus group was used, namely, needs assessment, evaluation,
developing an instrument, developing a conceptual framework, and as an
intervention. Most of the studies were done for needs assessment (n=19)
with very few in the other four areas. Focus groups are an invaluable
method that has been underutilised in CBR. These can aid the research
enquiry or in participatory paradigm, these can be utilised as a means
of community empowerment.
Full text available online:
www.aifo.it/english/resources/online/apdrj/apdrj105/focusgroups.pdf
16. Strickland, C. J. (2006). Challenges in community-based
participatory research implementation: Experiences in cancer prevention
with Pacific Northwest American Indian tribes. _Cancer Control_, 13(3),
230-6.
BACKGROUND: Much has been written about community-based participatory
research (CBPR) history and principles, but few have addressed
challenges in implementation in transcultural situations. The goal of
this discussion is to address CBPR implementation issues in cancer
prevention research with American Indian tribal communities in the
Pacific Northwest. METHOD: Information in this discussion is drawn from
qualitative research conducted over a 10-year period in which CBPR was
employed in cancer prevention research with Pacific Northwest Indian
tribes. CBPR principles provide the framework for the discussion:
establishing trusting relationships, assuring participation, sharing
power, and communicating. RESULTS: In this work, we found that CBPR is
appropriate for use in Pacific Northwest Indian tribal communities and
is compatible with cultural values. We also found that there are many
challenges. Recommendations are provided on needed institutional and
structural changes. CONCLUSIONS: CBPR is an important research approach
in addressing cancer prevention health disparities among American Indian
tribal communities. Continued effort needs to be directed toward
creating systems and structures to support researchers in utilizing this
method. Findings are of value to researchers aiming to implement CBPR in
Indian communities and to practitioners, policy makers, and
administrators who make decisions about CBPR funding and support
structures.
Full text available online:
https://www.moffitt.usf.edu/pubs/ccj/v13n3/pdf/230.pdf
17. Teufel-Shone, N. I., T. Siyuja, et al. (2006). Community-based
participatory research: conducting a formative assessment of factors
that influence youth wellness in the Hualapai community. _American
Journal of Public Health_, 96(9), 1623-8.
OBJECTIVES: Using a community-based participatory research approach, a
tribe-university team conducted a formative assessment of local factors
that influence youth wellness to guide the design of a culturally and
locally relevant health promotion program. METHODS: Open-ended
interviews with key informants, a school self-assessment using the
Centers for Disease Control's School Health Index, and a locally
generated environmental inventory provided data that were triangulated
to yield a composite of influential factors and perceived need within
the community. RESULTS: Family involvement and personal goal setting
were identified as key to youth wellness. Supportive programs were
described as having consistent adult leadership, structured activities,
and a positive local and regional image. Availability of illicit drugs
and alcohol, poor teacher attitude, and lack of adult involvement were
significant negative factors that impact youth behavior. CONCLUSIONS:
Local/native (emic) and university/nonnative (etic) perspectives and
abilities can be combined to yield a culturally relevant formative
assessment that is useful to public health planning. In this
collaborative effort, standard means of data collection and analysis
were modified in some cases to enhance and build upon the knowledge and
skills of community researchers.
18. Tiffany, J. S. (2006). Respondent-Driven Sampling in Participatory
Research Contexts: Participant-Driven Recruitment. _Journal of Urban
Health_, ahead of print, online first.
This article reports on the use of respondent-driven sampling (RDS) in
participatory and community-based research. Participant-driven
recruitment (PDR) retains all of the analytic capabilities of RDS while
enhancing the role of respondents in framing research questions,
instrument development, data interpretation, and other aspects of the
research process. Merging the capabilities of RDS with participatory
research methods, PDR creates new opportunities for engaging community
members in research addressing social issues and in utilizing research
findings within community contexts. This article outlines PDR's
synthesis of RDS and participatory research approaches, describes how
PDR is implemented in community contexts, and provides two examples of
the use of PDR, illustrating its process, potentials, and challenges.
19. Tyus, N. C., R. J. Freeman, et al. (2006). Development of a
replicable process for translating science into practical health
education messages. _Journal of the National Medical Association_,
98(9), 1505-9.
There has been considerable discussion about translating science into
practical messages, especially among urban minority and
"hard-to-reach" populations. Unfortunately, many research
findings rarely make it back in useful format to the general public. Few
innovative techniques have been established that provide researchers
with a systematic process for developing health awareness and prevention
messages for priority populations. The purpose of this paper is to
describe the early development and experience of a unique
community-based participatory process used to develop health promotion
messages for a predominantly low-income, black and African-American
community in Baltimore, MD. Scientific research findings from
peer-reviewed literature were identified by academic researchers.
Researchers then taught the science to graphic design students and
faculty. The graphic design students and faculty then worked with both
community residents and researchers to transform this information into
evidence-based public health education messages. The final products were
culturally and educationally appropriate, health promotion messages
reflecting urban imagery that were eagerly desired by the community.
This early outcome is in contrast to many previously developed messages
and materials created through processes with limited community
involvement and by individuals with limited practical knowledge of local
community culture or expertise in marketing or mass communication. This
process may potentially be utilized as a community-based participatory
approach to enhance the translation of scientific research into
desirable and appropriate health education messages.
Helena de Moura Castro
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