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Editorial: ”How Communities and Research Institutions Work Together to Dismantle Structural Racism and Advance Health Equity” 社论:"社区与研究机构如何携手消除结构性种族主义并促进健康公平
Pub Date : 2024-07-23 DOI: 10.35844/001c.121132
J. R. Moon, Ann M. Brearley, Drissa M. Toure
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引用次数: 0
Retention Reimagined: Participatory Action and Positive Deviancy for University Student Success 重新构想留校工作:参与式行动和积极反常现象促进大学生成功
Pub Date : 2024-04-01 DOI: 10.35844/001c.94415
A. Nakonechnyi, Brook Batch, N. Douglas, Ciara Tucker, Alexa Theuerling, Matthew Knox, Rebecca Allen
About half of U.S. university students who start their degrees never finish — higher education retention is a pressing problem that has remained stagnant since the 1960s. This article highlights strategies for conducting research on undergraduate retention done by and with undergraduates themselves. This article’s context is a participatory action research project that encompassed the creation of informative videos, paper resource guides, an innovative app, and a comprehensive video-making training course, all designed to empower students in navigating the complexities of college life effectively. We highlight the importance of prior research methods training for undergraduates and offer methods for seamlessly integrating such training into existing educational structures. To address the sensitivity of student retention issues, we introduce a positive deviancy framework as a valuable perspective. Furthermore, we stress the significance of increased participation during the data analysis phase of participatory research, advocating for hybrid, in-person, and online approaches. The article also reflects on the political and ethical challenges associated with conducting participatory research in higher education, drawing insights from existing literature and our own experiences.
约有一半的美国大学生在开始攻读学位时从未完成学业--高等教育的保留率是一个亟待解决的问题,自 20 世纪 60 年代以来一直停滞不前。本文重点介绍了由本科生自己并与本科生一起开展本科生保留率研究的策略。本文的背景是一个参与式行动研究项目,该项目包括制作内容丰富的视频、纸质资源指南、创新应用程序和综合视频制作培训课程,所有这些都旨在增强学生的能力,使他们能够有效地应对复杂的大学生活。我们强调了事先对本科生进行研究方法培训的重要性,并提供了将此类培训无缝整合到现有教育结构中的方法。为了解决学生保留问题的敏感性,我们引入了积极偏差框架作为一个有价值的视角。此外,我们还强调了在参与式研究的数据分析阶段提高参与度的重要性,提倡采用混合、面对面和在线的方法。文章还反思了在高等教育中开展参与式研究的政治和伦理挑战,并从现有文献和我们自身的经验中汲取了深刻的见解。
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引用次数: 0
The RESPCCT Study: Community-led Development of a Person-Centered Instrument to Measure Health Equity in Perinatal Services RESPCCT 研究:由社区主导开发以人为本的工具,用于衡量围产期服务中的健康公平性
Pub Date : 2024-04-01 DOI: 10.35844/001c.94399
S. Vedam, Kathrin Stoll, Lesley Tarasoff, Wanda Phillips-Beck, Winnie Lo, Kate MacDonald, Ariane Metellus, Michael Rost, Muriel Scott, Karen Hodge, Mo Korchinski, Marit van der Pijl, Cristina Alonso, Esther Clark, Ali Tatum, Rachel Olson, Kathy Xie, Mary Decker, Karolina Wenzel, Alexandra Roine, Wendy Hall
While Canadian maternal mortality rates suggest widespread access to high-quality care, perinatal health care outcomes and care experiences among pregnant people in Canada vary widely, particularly among communities that have been historically oppressed, excluded, and marginalized. The lack of patient-oriented research and measurement in perinatal services led to the RESPCCT (Research Examining the Stories of Pregnancy and Childbirth in Canada Today) Study which used a community participatory action research (CPAR) approach to examine experiences of pregnancy and childbirth care. In this paper, we describe co-creation of a person-centered survey instrument that measures respect, disrespect and mistreatment during pregnancy-related care of individuals with diverse identities, backgrounds and circumstances. The study was co-led by a Community Steering Council alongside a multi-disciplinary group of researchers and clinicians, and pilot tested by service users from across Canada. The final survey instrument includes items that assess respectful care across 17 domains, including validated measures of autonomy, respect, mistreatment, trauma, and discrimination. It also captures information about respondents’ identities, backgrounds, circumstances, access to care, provider type, and outcomes. A total of 6096 individuals participated in the survey. We describe how we implemented CPAR best practices, strengths, challenges, and lessons learned for instrument development in reproductive justice research.
虽然加拿大的孕产妇死亡率表明高质量的医疗服务非常普及,但加拿大孕妇的围产期保健结果和护理经验却千差万别,尤其是在历史上一直受到压迫、排斥和边缘化的社区。由于在围产期服务方面缺乏以患者为导向的研究和测量,因此开展了 "RESPCCT(Research Examining the Stories of Pregnancy and Childbirth in Canada Today)研究",该研究采用了社区参与行动研究(CPAR)的方法来考察怀孕和分娩护理经验。在本文中,我们介绍了共同创建以人为本的调查工具的情况,该工具可测量具有不同身份、背景和环境的个人在与妊娠相关的护理过程中受到的尊重、不尊重和虐待。这项研究由社区指导委员会与由研究人员和临床医生组成的多学科小组共同领导,并由来自加拿大各地的服务使用者进行试点测试。最终的调查工具包括评估 17 个领域的尊重护理的项目,其中包括自主、尊重、虐待、创伤和歧视的有效测量。它还收集了有关受访者身份、背景、环境、获得护理的机会、提供者类型和结果的信息。共有 6096 人参与了调查。我们介绍了如何在生殖公正研究中实施 CPAR 最佳实践、优势、挑战和工具开发方面的经验教训。
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引用次数: 0
Amplifying Youth Voices Using Digital Technology: A Case Study in Collaborative Research With Youth Service Organizations 利用数字技术放大青年的声音:与青年服务组织合作研究的案例研究
Pub Date : 2024-04-01 DOI: 10.35844/001c.92282
Rachel M. Magee, Amy M. Leman, Gowri Balasubramaniam
This paper presents three participatory methods informed by design techniques for engaging youth and youth services providers in research activities online. We detail two data collection methods: 1) a priming activity completed before a focus group to prompt reflection before direct interaction with the research team; and 2) a focus group activity imagining future organizational goals. We also share our technique for collaboratively analyzing preliminary research findings with a focus group activity. We developed these methods as a part of a larger research project examining how teens and those who provide services to teens through community programs conceptualized success in their experiences, sense of community, and program implementation. This paper discusses work with five organizations in a mid-size community in the midwestern United States during the COVID-19 pandemic (July 2021–February 2022). We aimed to amplify the voices and perspectives of teens in both research and the organizations they engaged in, bringing their participation to our data collection and analysis and to the adults and decision-makers of community organizations. We wanted to understand how youth or teens, defined as 13–19 years old, describe successful experiences in these out-of-school settings, how adults define success, and to identify connections and differences between these two perspectives. This paper details the techniques we developed and tested, shares examples from our research, and discusses the impacts and implications of these methods for future participatory work. We contribute evidence for the value of drawing on design methods for participatory methods, articulate benefits and considerations for intentionally doing so online, and share techniques that emphasize voice in both research and organizational partners’ program development and management.
本文介绍了三种参与式方法,这些方法借鉴了让青少年和青少年服务提供者参与在线研究活动的设计技术。我们详细介绍了两种数据收集方法:1)在与研究团队直接互动之前,在焦点小组活动之前完成一个引导活动,以促进思考;2)一个想象未来组织目标的焦点小组活动。我们还分享了通过焦点小组活动合作分析初步研究结果的技巧。我们开发的这些方法是一个大型研究项目的一部分,该项目研究青少年和那些通过社区项目为青少年提供服务的人如何在他们的经历、社区意识和项目实施中将成功概念化。本文讨论了在 COVID-19 大流行期间(2021 年 7 月至 2022 年 2 月)与美国中西部一个中等规模社区的五个组织合作开展的工作。我们的目标是在研究和青少年参与的组织中扩大青少年的声音和视角,让他们参与到我们的数据收集和分析中,并让社区组织的成年人和决策者参与其中。我们希望了解青少年(定义为 13-19 岁)如何描述在这些校外环境中的成功经历,成年人如何定义成功,并找出这两种观点之间的联系和差异。本文详细介绍了我们开发和测试的技术,分享了我们研究中的实例,并讨论了这些方法对未来参与式工作的影响和意义。我们为借鉴参与式方法的设计方法的价值提供了证据,阐明了有意在网上这样做的好处和注意事项,并分享了在研究和组织合作伙伴的项目开发和管理中强调发言权的技巧。
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引用次数: 0
Splicing the SEED and Delphi Methods: A Tutorial for Conducting Patient-Centered, Engagement Quality Improvement Projects SEED 和德尔菲方法的拼接:开展以患者为中心的参与式质量改进项目教程
Pub Date : 2024-04-01 DOI: 10.35844/001c.94264
Lisa B. Carey, R. Northrup, Lisa A. Jacobson, Clifton P. Thornton, K. Ruble, E. Paré-Blagoev
Conducting patient-centered engagement quality improvement projects requires careful consideration of methodologies that will allow a core project team to fully include participants as partners. Engagement activities must ensure that heterogeneous members of the project team are given an equal voice in investigation processes and that potential barriers to meaningful participation are reduced. This tutorial provides a model for intentionally blending elements of the Stakeholder Engagement in quEstion Development and prioritization (SEED) and Delphi methods to maximize participant engagement in a patient-centered quality improvement project to generate research questions related to patient-clinician communication of neurocognitive late effects of childhood cancers.
开展以患者为中心的参与式质量改进项目需要仔细考虑各种方法,使核心项目团队能够将参与者作为合作伙伴充分纳入其中。参与活动必须确保项目团队中的不同成员在调查过程中享有平等的发言权,并减少有意义参与的潜在障碍。本教程提供了一个模型,该模型有意识地融合了 "利益相关者参与项目开发和优先排序(SEED)"和 "德尔菲(Delphi)"方法的元素,以最大限度地提高参与者在以患者为中心的质量改进项目中的参与度,从而提出与患者和医师就儿童癌症的神经认知晚期效应进行沟通相关的研究问题。
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引用次数: 0
Quick, but Not Dirty: The Usefulness of Flash Mob Studies as a Method for Action Research in eHealth 快而不脏:快闪研究作为电子健康行动研究方法的实用性
Pub Date : 2024-04-01 DOI: 10.35844/001c.92284
Kira Oberschmidt, C. Grünloh, S. Jansen-Kosterink, Monique Tabak
Action research (AR) is a participatory research approach that works in iterative cycles that are conducted in practice. However, some cycles of AR can take a long time, slowing down the speed of iterations. Therefore, in this study we investigate the use of a relatively new method for AR: the flash mob. Flash mob studies lend themselves to spontaneous, unplanned participation, by collecting large amounts of data in a short time, while also analyzing and reporting quickly on findings. To investigate the applicability of the flash mob as a method for AR in eHealth projects, we conducted three flash mob studies in two research projects and drew recommendations based on observations, reflections and short pre- and post-surveys. Outcomes show that the flash mob is a potential method for AR, as it is situated in a practical setting where stakeholders can easily be involved, and its pace could speed up the AR cycles. To further improve the applicability for AR, our main recommendations include: promoting the flash mob adequately to increase participation and improve the involvement of ‘champions’; tracking interactions outside the flash mob (e.g., comments and questions from bystanders); and choosing an accessible and visible location, taking into account the activities associated with the location.
行动研究(AR)是一种参与式研究方法,它以迭代循环的方式在实践中开展。然而,行动研究的某些周期可能需要很长时间,从而减慢了迭代的速度。因此,在本研究中,我们调查了一种相对较新的 AR 方法的使用情况:快闪。快闪研究适合自发、无计划的参与,可以在短时间内收集大量数据,同时还能快速分析和报告研究结果。为了研究快闪作为 AR 方法在电子健康项目中的适用性,我们在两个研究项目中进行了三次快闪研究,并根据观察、反思和简短的前后调查提出了建议。研究结果表明,快闪活动是一种潜在的增强现实能力方法,因为它处于一种实际环境中,利益相关者可以很容易地参与进来,而且它的节奏可以加快增强现实能力的周期。为进一步提高 AR 的适用性,我们的主要建议包括:充分宣传快闪活动,以提高参与度和 "拥护者 "的参与度;跟踪快闪活动之外的互动情况(如旁观者的评论和问题);选择一个方便可见的地点,并考虑到与该地点相关的活动。
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引用次数: 0
“‘Keep the Fire Burning’: Applications and Culturally Congruent Research Strategies for Research on Sexual and Reproductive Health With Indigenous Women” "'让火焰继续燃烧':土著妇女性健康和生殖健康研究的应用与文化一致性研究策略"
Pub Date : 2024-04-01 DOI: 10.35844/001c.94023
J. Liddell, C. McKinley, Amy Stiffarm
Because of the long history of exploitative research with Indigenous groups, an ethical and empirical imperative exists for researchers, especially non-Indigenous scholars, to reflect on their own positionality and to use culturally congruent methodologies and strategies when conducting research. A simultaneous need is for research on the reproductive and sexual health experiences of Indigenous women, who experience extensive reproductive health disparities and reproductive injustices. The purpose of this article is to provide an example of a best practice in conducting community engaged research to explore the reproductive and sexual healthcare experiences of Indigenous women, through the identification of factors that promote and that act as barriers to health. We first provide an overview of the literature describing the history of researcher exploitation before providing an in-depth discussion of the methodology used in this study. We then describe an application of the qualitative description methodology in 31 semi-structured life-history interviews with Indigenous women. The strategies used in this study facilitated the provision of rich qualitative information about reproductive health, which will be used to develop interventions for tribal members. This study addresses gaps by providing an example of a culturally appropriate methodology and its application with Indigenous women.
由于对土著群体的剥削性研究由来已久,研究人员,尤其是非土著学者,在进行研究时,必须从伦理和经验的角度反思自己的立场,并使用与文化相一致的方法和策略。与此同时,还需要对土著妇女的生殖健康和性健康经历进行研究,因为她们在生殖健康方面经历着广泛的差异和生殖不公正。本文旨在提供开展社区参与研究的最佳实践范例,通过确定促进健康和阻碍健康的因素,探讨土著妇女的生殖和性保健经历。我们首先对文献进行了概述,介绍了研究人员被剥削的历史,然后对本研究中使用的方法进行了深入讨论。然后,我们介绍了定性描述方法在 31 个土著妇女半结构式生活史访谈中的应用。本研究采用的策略有助于提供有关生殖健康的丰富定性信息,这些信息将用于为部落成员制定干预措施。这项研究提供了一个文化上适当的方法及其在土著妇女中应用的实例,从而弥补了差距。
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引用次数: 0
The Value of Student Voice and Choice: A Guide for Trauma-Informed Participatory Action Research in the University Setting 学生声音和选择的价值:在大学环境中开展以创伤为基础的参与式行动研究指南
Pub Date : 2024-04-01 DOI: 10.35844/001c.94139
Stephanie Hargrove, Stephanie Schuette, Noga Zerubavel, Jan Holton, Warren Kinghorn
Many college and university students live with the effects of trauma, and more research is needed around trauma-informed practices in higher education. It is important that this research represents the needs and interests of students and that it be conducted in a way that is appropriate and safe for trauma survivors. We describe the process of forming a vertically integrated, interdisciplinary Participatory Action Research (PAR) team of students and faculty dedicated to creating a trauma-informed learning environment on a university campus and argue that PAR and Trauma-Informed Care (TIC) practices provide important and complementary frameworks for inclusive, just, and community-responsive research. We describe how this research team embodied core PAR values of collaboration, incorporation of local knowledge, eclecticism and diversity, case orientation, emergent process, and linking scientific understanding to social action, along with the TIC commitments of trauma awareness, safety, choice and empowerment, and strengths-based orientation. We describe lessons learned by the team and provide recommendations for researchers who seek to incorporate both PAR and TIC principles into their work on trauma and education. Central lessons learned from this process highlighted the importance of 1) establishing and maintaining psychological safety, 2) speaking openly about trauma, and 3) privileging responsiveness to the difficulty of working with trauma while living through ongoing global stressors. Specific recommendations include 1) lead with values, 2) acknowledge and attend to context, 3) recognize that defining trauma is controversial, 4) model courageous conversations, 5) emphasize responsiveness and care, and 6) teach strategies for managing painful emotions.
许多大专院校学生都生活在创伤的影响之下,因此需要在高等教育中开展更多有关创伤知情实践的研究。重要的是,这项研究要代表学生的需求和利益,并以适合创伤幸存者且安全的方式进行。我们描述了一个由学生和教师组成的纵向整合、跨学科参与式行动研究(PAR)团队致力于在大学校园中创建一个创伤知情学习环境的过程,并认为参与式行动研究和创伤知情护理(TIC)实践为包容性、公正性和社区响应性研究提供了重要的互补框架。我们描述了这个研究团队如何体现 PAR 的核心价值,即合作、融入当地知识、折衷主义和多样性、案例导向、新兴过程、将科学理解与社会行动联系起来,以及 TIC 的承诺,即创伤意识、安全、选择和赋权以及基于优势的导向。我们介绍了该团队的经验教训,并为寻求将 PAR 和 TIC 原则纳入其创伤和教育工作的研究人员提供了建议。从这一过程中汲取的主要经验教训强调了以下几点的重要性:1)建立和维护心理安全;2)公开谈论创伤;3)在承受持续的全球压力的同时,优先考虑应对创伤工作的困难。具体建议包括:1)以价值观为先导;2)承认并关注背景;3)认识到对创伤的定义是有争议的;4)树立勇敢对话的榜样;5)强调回应和关怀;6)传授管理痛苦情绪的策略。
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引用次数: 0
The Equity-Centered Participatory Compensation Model (EPCM): A Tutorial for This Emergent Methodology 以公平为中心的参与式薪酬模式 (EPCM):这一新兴方法的教程
Pub Date : 2024-04-01 DOI: 10.35844/001c.92362
Maya Rabinowitz, Isabelle González, Rhianna C. Rogers
A key component of equity-focused research is centering marginalized voices throughout the entire research process. To fully integrate community voice, fair and flexible compensation for community members’ participation is required. Relying on equity and community-based participatory research principles, the Equity-Centered Participatory Compensation Model (EPCM) offers one method to ensure that compensation rates prioritize the well-being, comfort, and agency of research participants. This tutorial provides instructions for the implementation of a 4-step process through which researchers can shape their compensation practices to match the individual needs of their participants. We provide examples from our own project regarding how we mapped the compensation model to our research activities and include a rubric of best practices for applying equity principles to compensation rates. We conclude with suggestions for navigating institutional restrictions when implementing this new methodology. We intend for this model to serve as a methodological framework for future researchers to help promote equitable fiscal relationships with community participants.
注重公平的研究的一个关键组成部分是在整个研究过程中关注边缘化群体的声音。要充分融入社区的声音,就必须为社区成员的参与提供公平、灵活的补偿。根据公平和基于社区的参与式研究原则,以公平为中心的参与式报酬模型 (EPCM) 提供了一种方法,可确保报酬率优先考虑研究参与者的福祉、舒适度和能动性。本教程提供了实施 4 个步骤的指导,研究人员可以通过这 4 个步骤调整他们的补偿措施,以满足参与者的个人需求。我们以自己的项目为例,介绍了如何将补偿模式与我们的研究活动相结合,并提供了将公平原则应用于补偿标准的最佳实践标准。最后,我们提出了在实施这一新方法时如何应对机构限制的建议。我们希望这一模式能够成为未来研究人员的方法框架,帮助促进与社区参与者之间的公平财务关系。
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引用次数: 0
Program Evaluation and Improvement by a Homeless Community Using a Human Centered Design Approach 无家可归者社区采用以人为本的设计方法进行项目评估和改进
Pub Date : 2024-04-01 DOI: 10.35844/001c.92256
Conner Olson, Stuart W. Grande, William Toran, William Walsh
People experiencing homelessness are often absent from the development and implementation of new housing projects. As mounting evidence demonstrates the link between health and housing, it seems ineffective to design solutions without the participation and insight of those who are chronically unhoused. This study describes a method for program and product evaluation that people with lived experience of homelessness can use to determine the value of new offerings and then design improvements based on their evaluation. Specifically, this article reports the experience of evaluating a handbook describing the operations of a new type of housing for people experiencing homelessness. The research team, which included people with lived experience of homelessness, performed interviews to evaluate plans in the handbook, analyzed those results, and designed improvements in the operations of the housing based on the program evaluation. The team utilized participatory analysis of the interview data and then used a Human-Centered Design approach to generate ideas based on the analysis and develop concepts to improve the operational plan. The evaluation identified four high-priority problems with the operational plan and the group then designed three unique solutions to address those problems. This project demonstrates that people with lived experience of homelessness can participate as equal partners in the evaluation of a program and the subsequent program improvement design that was based on their evaluations.
在新住房项目的开发和实施过程中,无家可归者往往缺席。越来越多的证据表明,健康与住房之间存在联系,如果没有长期无家可归者的参与和洞察力,设计解决方案似乎是无效的。本研究介绍了一种计划和产品评估方法,无家可归者可以利用这种方法来确定新产品的价值,然后根据评估结果设计改进方案。具体来说,本文报告了对一本介绍新型无家可归者住房运作的手册进行评估的经验。研究小组成员包括有无家可归经历的人,他们通过访谈对手册中的计划进行了评估,分析了这些结果,并根据计划评估结果设计了住房运营的改进方案。研究小组对访谈数据进行了参与式分析,然后采用以人为本的设计方法,在分析的基础上提出了改进运营计划的想法和概念。评估确定了运营计划中四个高度优先的问题,小组随后设计了三个独特的解决方案来解决这些问题。该项目表明,有无家可归经历的人可以作为平等的合作伙伴参与计划评估,并根据他们的评估结果进行后续的计划改进设计。
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引用次数: 0
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Journal of participatory research methods
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