Between 2004 and 2007, Girls Incorporated
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conducted research about the experience of five affiliates from different parts of the United States as they engaged with girls in Girls Study Girls Inc., ...a participatory evaluation project that explored the meaning and impact of Girls Inc. environments and uncovered ways such environments can be improved. We describe the context and motivation for using participatory action research PAR in Girls Inc. environments and discuss the relevance and importance of PAR for organizations that empower girls and young women. We explain the process of training and engaging Girls Inc. members in research, discuss the effectiveness of Girls Study Girls Inc. as an evaluation strategy, and conclude this article with lessons learned and recommendations for using PAR in evaluating youth development programs.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
The goal of this work was to provide a community-academic partnership with actionable information for physical activity (PA) for a rural health-disparate region. Identified PA outlets were audited ...and combined with survey data for 813 residents in the region. Less than a third of sampled residents (28%) met PA recommendations, with low perceptions of safety for PA. PA resource outlets in rural areas had higher numbers of incivilities. On the basis of our findings, 4 actionable strategies are recommended: shared-use agreements, reducing incivilities, addressing issues related to safety from traffic, and increasing the number of PA resources in rural areas.
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BFBNIB, CMK, NMLJ, NUK, PNG, UL, UM, UPUK
Building the collective capacity of racialized women to meaningfully lead and engage in research is critical to health equity. To address the silence and stigma related to HIV/sexually transmitted ...infections (STIs) among South Asian women in Canada, peer leadership and engagement were identified as important strategies to promote open discussion about sexual health.
Underpinned by the principle of 'nothing about us without us', the objectives of the Story Sharing for Sexual Health (SSSH) research study included engaging and training South Asian women peer leaders to become an integral part of the study and build community research capacity. To achieve these objectives, it was critical to support the peer leaders in gaining a thorough understanding of the research ethics, protocols and teamwork principles, and to consolidate skills in group facilitation and community engagement.
The peer leaders attended four full-day training sessions on the social determinants of health and gender equity for racialized populations, HIV/STI and sexual health in the context of South Asian communities, community-based participatory research (CBPR) principles, skills in focus group facilitation, community partnerships building, and storytelling epistemologies. A training manual was developed. Evaluation of the training program included 1) evaluation forms, 2) process evaluations through journal writing and feedback sessions, and 3) implementation outcomes.
The SSSH peer research training program was effective. Peer leaders demonstrated effectiveness in liaising with partner agencies, engaging South Asian women in sexual health discussion, completing CBPR activities and team building. Knowledge generated can be applied in CBPR with other racialized women populations.
Despite the growing evidence of the benefits of physical activity (PA) in individuals with rheumatoid arthritis (RA), the majority is not physically active enough. An innovative strategy is to engage ...lead users in the development of PA interventions provided over the internet. The aim was to explore lead users' ideas and prioritization of core features in a future internet service targeting adoption and maintenance of healthy PA in people with RA.
Six focus group interviews were performed with a purposively selected sample of 26 individuals with RA. Data were analyzed with qualitative content analysis and quantification of participants' prioritization of most important content.
Six categories were identified as core features for a future internet service: up-to-date and evidence-based information and instructions, self-regulation tools, social interaction, personalized set-up, attractive design and content, and access to the internet service. The categories represented four themes, or core aspects, important to consider in the design of the future service: (1) content, (2) customized options, (3) user interface and (4) access and implementation.
This is, to the best of our knowledge, the first study involving people with RA in the development of an internet service to support the adoption and maintenance of PA.Participants helped identifying core features and aspects important to consider and further explore during the next phase of development. We hypothesize that involvement of lead users will make transfer from theory to service more adequate and user-friendly and therefore will be an effective mean to facilitate PA behavior change.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Abstract Background Recent trends indicate research targeting outcomes of importance to people with disabilities, such as spinal cord injury (SCI), may be best informed by those individuals; however, ...there are very few published rehabilitation intervention studies that include people with disabilities in the research process in a role beyond study participant. Objective To describe a community-based participatory research (CBPR) approach to the development and pilot testing of an intervention using community-based Peer Navigators with SCI to provide health education to individuals with SCI, with the goal of reducing preventable secondary conditions and rehospitalizations, and improving community participation. Methods A CBPR framework guides the research partnership between academic researchers and a community-based team of individuals who either have SCI or provide SCI-related services. Using this framework, the processes of our research partnership supporting the current study are described including: partnership formation, problem identification, intervention development, and pilot testing of the intervention. Challenges associated with CBPR are identified. Results Using CBPR, the SCI Peer Navigator intervention addresses the partnership's priority issues identified in the formative studies. Utilization of the framework and integration of CBPR principles into all phases of research have promoted sustainability of the partnership. Recognition of and proactive planning for challenges that are commonly encountered in CBPR, such as sharing power and limited resources, has helped sustain our partnership. Conclusions The CBPR framework provides a guide for inclusion of individuals with SCI as research partners in the development, implementation, and evaluation of interventions intended to improve outcomes after SCI.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
MENDENHALL TJ, BERGE JM, HARPER P, GREENCROW B, LITTLEWALKER N, WHITEEAGLE S and BROWNOWL S. Nursing Inquiry 2010; 17: 359–372 The Family Education Diabetes Series (FEDS): community‐based ...participatory research with a midwestern American Indian community
Indigenous people around the globe tend to struggle with poorer health and well‐being than their non‐indigenous counterparts. One area that this is especially evident is in the epidemic of diabetes in North America’s American Indians (AIs) – who evidence higher prevalence rates and concomitant disease‐related complications than any other racial/ethnic group. As researchers and AI communities work together to transcend conventional top‐down, service‐delivery approaches to care, community‐based participatory research is beginning to show promise as a way to partner contemporary biomedical knowledge with the lived‐experience, wisdom, and customs of Indigenous people. This study describes the Family Education Diabetes Series (FEDS) as an example of such effort, and highlights pilot findings assessing its value and impact across key diabetes‐relevant variables. Following 36 intervention participants across baseline, 3‐month, and 6‐month time periods, data show significant improvements in weight, blood pressure, and metabolic control (A1c). Strengths and limitations of this investigation are presented, along with suggestions about how to further advance and empirically test the work across other Indigenous communities.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK, VSZLJ
Abstract Participatory research can elevate research relevance and effectiveness. The literature contains few first-hand descriptions of community members engaged in research. In 2003, the High ...Plains Research Network convened a Community Advisory Council (CAC) that quickly began providing input, feedback, innovation, and dissemination efforts. After receiving a participatory research grant from the Centers for Disease Control and Prevention aimed at increasing colorectal cancer screening, the CAC participated in an intensive training on colon cancer prevention and spent 6 months developing a locally relevant intervention—Testing to Prevent Colon Cancer. CAC members participated in all aspects of the research including intervention messaging, survey design, recruitment, implementation, analysis and interpretation of data, and dissemination of results including presentations at national venues and coauthoring manuscripts. Our experience attests to the power of participatory research in efforts to improve health outcomes.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Objective:
Recently, there has been a consistent call for Indigenous health research to be community-driven. However, for a variety of reasons, many projects, such as the one featured here, start as ...‘top-down’. Using ten accepted principles for Aboriginal health research, the present article illustrates how a top-down project can be transformed into a ‘bottom-up’ community-driven project.
Method:
A table of examples is provided to show how the ten principles were translated into practice to create a bottom-up process.
Results:
We suggest that key elements for creating a bottom-up process are iterative conversations and community involvement that goes beyond notional engagement. A feature of community involvement is generating and sustaining ongoing conversations with multiple levels of community (organisations, health professionals, Elders, community members, project-specific groups) in a variety of different forums across the entire duration of a project. Local research teams, a commitment to building capacity in the local Indigenous workforce, and adequate timelines and funding are other factors that we hypothesise may contribute to successful outcomes.
Conclusion:
The article contributes to a much-needed evidence base demonstrating how appropriate structures and strategies may create bottom-up processes leading to successful outcomes.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
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