Project description:BackgroundEnvironmental health risks are disproportionately colocated with communities in poverty and communities of color. In some cases, participatory research projects have effectively addressed structural causes of health risk in environmental justice (EJ) communities. However, many such projects fail to catalyze change at a structural level.ObjectivesThis review employs Critical Interpretive Synthesis (CIS) to theorize specific elements of participatory research for environmental health that effectively prompt structural change in EJ communities.MethodsAcademic database search was used to identify peer-reviewed literature describing participatory research with EJ communities to address environmental health. Synthetic constructs were developed iteratively related to study characteristics, design elements, and outcomes; and data were extracted for included records. Statistical analyses were performed to assess correlations between study design elements and structural change outcomes. Through critical, comparative, and contextual analyses of the "structural change" case study group and "non- structural change" group, informed by relevant theoretical literature, a synthesizing argument was generated.ResultsFrom 505 total records identified, eligibility screening produced 232 case study articles, representing 154 case studies, and 55 theoretical articles for synthesis. Twenty-six case studies resulted in a structural change outcome. The synthesizing argument states that participatory research with EJ communities may be more likely to result in structural change when a) community members hold formal leadership roles; b) project design includes decision-makers and policy goals; and c) long term partnerships are sustained through multiple funding mechanisms. The assumption of EJ community benefit through research participation is critically examined.DiscussionRecommended future directions include establishing structural change as a goal of participatory research, employing participatory assessment of community benefit, and increased hiring of faculty of color at research institutions. The power, privilege, and political influence that academic institutions are able to leverage in partnership with EJ communities may be as valuable as the research itself. https://doi.org/10.1289/EHP6274.

Project description:The importance of providing evidence-based palliative care for people with dementia is increasingly acknowledged as important for patient outcomes. In Ireland, evidence-based guidance has been developed in order to address key features of dementia palliative care, including the management of pain, medications and hydration and nutrition. The aim of this study was to identify and explore the factors affecting the implementation of evidence-based guidance on dementia palliative care. The Consolidated Framework for Implementation (CFIR) guided a mixed-method pre-post study. One guidance document pertaining to the management of pain, medication or hydration and nutrition was implemented in three long-term care facilities. Participatory action research in the form of work-based learning groups was used to implement the guidance, drawing on a situational analysis (pre-implementation). Staff questionnaires and audits were conducted pre- and post-implementation while champion interviews were also conducted post-implementation. Features of the guidance, the inner setting components such as readiness to change, and the process of implementation were most frequently identified as impacting implementation. Components of the outer setting, such as external policy incentives and individual characteristics, featured less commonly. Data from qualitative interviews revealed that the guidance was perceived as advantageous or complimentary to previous care provided. Within the inner setting, leadership and support from other colleagues facilitated implementation. However, limited availability of other healthcare professionals to assist with carrying out guidance actions presented a barrier in some facilities. The external facilitators of the work-based learning groups (WBLGs) were perceived as experienced and encouraged active participation and reflection on practices. Despite the challenge of releasing staff to attend the WBLGs, quantitative data demonstrated reduced staff de-motivation amongst those who did attend was noted post-implementation (pre-Mdn = 19.50 versus post-Mdn = 22.00, U = 497.00, p = 0.07). A situational analysis informed by the CFIR framework in conjunction with a participatory action research approach helped to advance the implementation of the guidance. The progress of implementation depended on the extent to which evidence-based care was previously being implemented at each site. Post-implementation analysis using CFIR identified challenges to address in future projects such as staff cover and timing of training to facilitate attendance for staff with different working hours. Facilitators included multidisciplinary engagement with the intervention and champions at each site to support the implementation process.

Project description:National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Project description:BACKGROUND:A longstanding challenge of community-based participatory research (CBPR) has been to anchor evaluation and practice in a relevant theoretical framework of community change, which articulates specific and concrete evaluative benchmarks. Social movement theories provide a broad range of theoretical tools to understand and facilitate social change processes, such as those involved in CBPR. Social movement theories have the potential to provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR. The current study builds on a social movement perspective to assess the processes and intermediate outcomes of a longstanding health promotion CBPR project with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KDSPP). METHODS:This research uses a case study design layered on a movement-building evaluation framework, which allows progress to be tracked over time. Data collection strategies included document (scientific and organizational) review (n = 51) and talking circles with four important community stakeholder groups (n = 24). RESULTS:Findings provide an innovative and chronological perspective of the evolution of KSDPP as seen through a social movement lens, and identify intermediate outcomes associated with different dimensions of movement building achieved by the project over time (mobilization, leadership, vision and frames, alliance and partnerships, as well as advocacy and action strategies). It also points to areas of improvement for KSDPP in building its potential for action. CONCLUSION:While this study's results are directly relevant and applicable to the local context of KSDPP, they also highlight useful lessons and conclusions for the planning and evaluation of other long-standing and sustainable CBPR initiatives. The conceptual framework provides meaningful benchmarks to track evidence of progress in the context of CBPR. Findings from the study offer new ways of thinking about the evaluation of CBPR projects and their progress by drawing on frameworks that guide other forms of collective action.

Project description:BackgroundPatient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified.Main bodyEmbryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director's periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29).ConclusionBench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.

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Community-based participatory research in palliative care: a social justice imperative.

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