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Journal of participatory research methods最新文献

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What “Coproduction” in Participatory Research Means From Participants’ Perspectives: A Collaborative Autoethnographic Inquiry 参与式研究中的“合作生产”从参与者的角度来看意味着什么:一种协作的自我民族志探究
Pub Date : 2022-08-26 DOI: 10.35844/001c.37638
L. Phillips, A. Larsen, Lotte Mengel
In participatory health research, people with lived experience of illness participate as co-researchers in the co-production of knowledge along with academic researchers. A central idea is to democratize knowledge production by creating space for co-researchers’ experiential, embodied knowledge. The participatory research literature includes reflexive analyses exploring the complexities of co-production in participatory research. However, despite the democratic ideals, these analyses are almost always written by academic researchers alone. In this article, two co-researchers with lived experience of Parkinson’s disease and an academic researcher carry out a collaborative autoethnographic inquiry into what “co-production” in participatory research means for participants from their own perspectives. In so doing, the article presents and illustrates a distinctive format for collaborative autoethnography as a participatory method that enables co-researchers and academic researchers to investigate, write, and publish about co-production together through dialogue across personal narratives. It also presents the specific insider insights the inquiry generated into what co-production means for participants.
在参与式健康研究中,有疾病生活经历的人作为共同研究人员与学术研究人员一起参与知识的共同生产。一个核心思想是通过为共同研究者的经验化、具体化知识创造空间,使知识生产民主化。参与式研究文献包括反思性分析,探讨参与式研究中共同生产的复杂性。然而,尽管有民主的理想,这些分析几乎总是由学术研究人员独自撰写的。在这篇文章中,两位有帕金森病生活经验的联合研究人员和一位学术研究人员从他们自己的角度,对参与式研究中的“共同生产”对参与者意味着什么进行了合作的民族志调查。在这样做的过程中,这篇文章提出并说明了合作民族志的一种独特形式,作为一种参与性方法,使联合研究人员和学术研究人员能够通过个人叙事的对话,共同调查、写作和发表关于共同制作的内容。它还介绍了调查产生的关于联合制作对参与者意味着什么的具体内部见解。
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引用次数: 2
Enhancing Digitally-Mediated Human-Centred Design With Digitally-Mediated Community Based Participatory Research Approaches for the Development of a Digital Access-to-Justice Platform for Military Veterans and Their Families 利用基于社区的参与式研究方法增强以数字为媒介的以人为本的设计,为退伍军人及其家属开发数字诉诸司法平台
Pub Date : 2022-08-26 DOI: 10.35844/001c.37039
O. Olusanya, W. Collier, Simon Marshall, Victoria Knapp, Alex Baldwin
Before the COVID-19 crisis, in-person engagement was the main method of ensuring community participation in participatory research processes. However, the pandemic accelerated the switch to digitally-mediated participatory research methods (DMPRMs). This article presents a case study of a digitally-mediated, human-centered design (DMHCD) process enhanced by digitally-mediated community-based participatory research approaches (DMCBPR) as part of our efforts to develop a digital access-to-justice platform for military veterans and their families. We reflect on our experience of enhancing DMHCD with DMCBPR approaches and include insights about how to facilitate the transition from in-person HCD+CBPR to DMHCD-DMCBPR. We also discuss the dual challenges of combining two different approaches while shifting to a virtual/online participatory research framework. Finally, the present study aims to achieve the following objectives: first, to add to a small—but growing—body of research around digitally-mediated participatory research methods; and second, to add to the emerging literature on HCD+CBPR integration approaches to design interventions for underserved populations.
在新冠肺炎危机之前,住院人员参与是确保社区参与参与性研究过程的主要方法。然而,疫情加速了向数字媒介参与式研究方法(DMPRM)的转变。本文介绍了一个以数字为媒介、以人为中心的设计(DMHCD)过程的案例研究,该过程通过数字为媒介的社区参与性研究方法(DMCBPR)得到了增强,作为我们为退伍军人及其家人开发数字司法平台的努力的一部分。我们反思了我们用DMCBPR方法增强DMHCD的经验,并包括关于如何促进从面对面HCD+CBPR到DMHCD-DMCBPR的转变的见解。我们还讨论了将两种不同的方法结合起来,同时转向虚拟/在线参与式研究框架的双重挑战。最后,本研究旨在实现以下目标:首先,围绕数字媒介的参与式研究方法,增加一小部分但不断增长的研究;第二,增加关于HCD+CBPR整合方法的新兴文献,为服务不足的人群设计干预措施。
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引用次数: 0
Towards an Anticolonial Photovoice: A Research Practice Guide to Theoretical and Methodological Considerations 走向反殖民的光声:理论和方法考虑的研究实践指南
Pub Date : 2022-08-26 DOI: 10.35844/001c.37606
J. Fricas
Photovoice researchers must avoid an ahistorical application of the method by critically examining the implementation and dissemination of photovoice projects. Recognizing that photovoice is not automatically empowering and that dismantling power dynamics is an ongoing struggle requiring constant vigilance to ethical, methodological, and representational issues, I propose an anticolonial framework for photovoice, drawing on the work of anticolonial scholars. This approach acknowledges the legacies of colonialism and racism within health and research systems, an imperative for researchers working with Indigenous and marginalized communities. I address multiple phases of a photovoice project, problematizing power relations in each phase and suggesting how to anticolonially adapt theoretical orientations and methodological processes. Areas under-addressed in the photovoice literature, such as epistemic justice, recruitment power relations, decolonized concepts of rigor, problematization of pseudonyms/anonymizing, and cross-language research and writing, are discussed, interweaving analyses with practical guidance from and outcomes of my photovoice research with Indigenous and mestizo communities in Ecuador.
光声研究人员必须通过严格检查光声项目的实施和传播来避免该方法的非历史应用。认识到光声并不能自动赋予权力,而拆除权力动力学是一场持续的斗争,需要对伦理、方法和代表性问题保持警惕,我提出了一个反殖民的光声框架,借鉴了反殖民学者的工作。这种方法承认殖民主义和种族主义在卫生和研究系统中的遗留问题,这对于与土著和边缘化社区合作的研究人员来说是必不可少的。我讨论了一个光声项目的多个阶段,对每个阶段的权力关系提出了问题,并建议如何适应反殖民主义的理论取向和方法过程。讨论了光声文献中未解决的领域,如认识正义,招聘权力关系,严格的非殖民化概念,假名/匿名化的问题化以及跨语言研究和写作,并将分析与我与厄瓜多尔土著和混血儿社区的光声研究的实际指导和结果相结合。
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引用次数: 4
Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers 病人科学:以慢性病患者为联合研究者的公民科学
Pub Date : 2022-05-23 DOI: 10.35844/001c.35634
N. Heyen, J. Gardecki, D. Eidt-Koch, M. Schlangen, Sophie Pauly, Olaf Eickmeier, T. Wagner, T. Bratan
Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen scientists jointly plans, implements, and evaluates a scientific study on a chronic disease from which the citizen (patient) scientists themselves suffer. We call this approach patient science; it systematically makes use of the patients’ expertise of living with the disease. This article describes the pilot project and conceptual differences compared to other participatory approaches in medical and health research. It elaborates on the implications of involving chronically ill people as co-researchers and, finally, reflects on the benefits and challenges of patient science.
健康相关研究中的公民科学项目通常采用众包方法,非专业人员主要在数据收集中发挥供应作用。相比之下,本文提出了一种更高参与水平(共同创造)的方法,由专业科学家和公民科学家组成的团队共同规划、实施和评估一项关于公民(患者)科学家自身所患慢性病的科学研究。我们称这种方法为病人科学;它系统地利用了患者与疾病共存的专业知识。本文介绍了试点项目以及与其他参与式医疗卫生研究方法相比的概念差异。它详细阐述了让慢性病患者作为联合研究人员参与的意义,并最终反思了患者科学的好处和挑战。
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引用次数: 6
Evaluating Community Co-Design, Maintenance and Ownership of Green Spaces in Underserved Communities Using Participatory Research 利用参与式研究评估服务不足社区的社区共同设计、维护和绿色空间所有权
Pub Date : 2022-05-23 DOI: 10.35844/001c.35632
Lizzie Caperon, R. McEachan, Charlotte Endacott, S. Ahern
Green space is beneficial for health, and the co-design of green spaces is vital to allow community input into their development and encourage their use. However, to date there is limited evidence about the most effective ways to ensure the co-design, maintenance and ownership of green spaces by communities over time. Participatory methods such as transect walks with photovoice offer an opportunity to explore these issues. This study describes an original participatory project in a deprived, multi-ethnic part of Bradford, UK, which aims to use innovative participatory methods to explore how the maintenance, co-design and ownership of green spaces affect their use for health benefits. Participatory methods will be used to explore local community perceptions of and satisfaction with their local green spaces. Three phases of data collection will be conducted in a longitudinal qualitative study spanning 3 years. Each phase will use transect walks with photovoice and semi-structured interviews (n= 24), and focus groups (participant n=40) in four green space locations in Bradford, UK.
绿色空间有利于健康,绿色空间的共同设计对于允许社区参与其发展并鼓励其使用至关重要。然而,迄今为止,关于确保社区共同设计、维护和拥有绿色空间的最有效方法的证据有限。参与性的方法,如带着光声的样带行走,提供了一个探索这些问题的机会。本研究描述了英国布拉德福德一个贫困的多民族地区的原始参与式项目,该项目旨在使用创新的参与式方法来探索绿色空间的维护、共同设计和所有权如何影响其健康效益的使用。参与式方法将用于探索当地社区对当地绿色空间的看法和满意度。在为期3年的纵向定性研究中,将进行三个阶段的数据收集。每个阶段将在英国布拉德福德的四个绿地地点使用带影像语音和半结构化访谈的样带行走(n= 24)和焦点小组(参与者n=40)。
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引用次数: 1
Brief Report: Pitfalls and Potentials in Using Methods From Action Research and Systems Thinking When Engaging and Mobilizing Participants in a Community 简要报告:在参与和动员社区参与者时,使用行动研究和系统思考方法的陷阱和潜力
Pub Date : 2022-05-23 DOI: 10.35844/001c.35636
A. Hansen, Ida Foxvig, Gül Sakal, C. D. Klinker, Anne Sidenius
This brief report discusses our experiences of exploring recruitment challenges in family-focused alcohol treatment and seeking possible solutions to these challenges. We used methods, inspired by Action Research and Systems Thinking, to engage and mobilize participants in two Danish rural municipalities. In the project, local participation from a broad range of stakeholders and a shared understanding of the local context gave rise to increased focus on and awareness of alcohol challenges in the community. We reflect on the importance of assessing whether a community is ready for change; the importance of integrating capacity-building and implementation from the beginning; the importance of engaging a wide range of stakeholders when creating a system map and the importance of recruiting community leaders to workshops, as implementation requires the engagement of persons who have the authority, capacity, and networks to lead systems changes across the community.
这篇简短的报告讨论了我们在以家庭为中心的酒精治疗中探索招募挑战的经验,并寻求应对这些挑战的可能解决方案。在行动研究和系统思考的启发下,我们采用了一些方法来吸引和动员丹麦两个农村城市的参与者。在该项目中,来自广泛利益攸关方的当地参与以及对当地情况的共同理解,使社区更加关注和认识到酒精问题带来的挑战。我们思考评估一个社区是否准备好迎接变革的重要性;从一开始就把能力建设和执行工作结合起来的重要性;在创建系统地图时,让广泛的涉众参与进来的重要性,以及招募社区领导参加研讨会的重要性,因为实施需要让拥有权威、能力和网络的人参与进来,以领导整个社区的系统变更。
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引用次数: 0
Shared Purpose: Leveraging a Community-Academic Partnership to Increase Local Environmental Health Awareness via Community Science. 共同目标:利用社区与学术界的伙伴关系,通过社区科学提高当地的环境健康意识。
Pub Date : 2022-01-01 Epub Date: 2022-10-24 DOI: 10.35844/001c.38475
Lisa J Martin, Vincent Hill, Curtis Maples, Theresa Baker, Shereen Elshaer, Melinda Butsch Kovacic

Environmental factors can lead to disease and health disparities when the places where people live, learn, work, play and pray are burdened by social inequities. Non-formal programs that explicitly connect local environmental exposures and human health could be of great value to communities at greatest risk. The purpose of this work was to co-create relevant and engaging education with youth and community stakeholders of all ages that more explicitly emphasizes the link between the local environment and community members' health through a hands-on community science experience. Our experiences helped strengthen our community-academic partnership and establish a route to create and tailor informal programming to meet local needs and engage people in community science with academic partners. We generated two distinctly different community science neighborhood audit tools designed to differently engage our community partners and inform community participants of their local environments and its role on their health. Through community meetings, we garnered critical insight from our stakeholders. While neither of the tools and accompanying data collected were deemed to be scientifically generalizable, our ongoing and future work has benefited from important lessons learned from their creation and sharing.

当人们生活、学习、工作、娱乐和祈祷的地方受到社会不平等的影响时,环境因素就会导致疾病和健康差异。将当地环境暴露与人类健康明确联系起来的非正规计划,对于面临最大风险的社区可能具有重要价值。这项工作的目的是与各年龄段的青少年和社区利益相关者共同创建相关的、有吸引力的教育,通过亲身体验社区科学,更加明确地强调当地环境与社区成员健康之间的联系。我们的经验有助于加强我们的社区-学术合作伙伴关系,并建立了一条创建和定制非正式计划的路线,以满足当地需求,并与学术合作伙伴一起吸引人们参与社区科学。我们开发了两种截然不同的社区科学邻里审计工具,旨在以不同的方式吸引我们的社区合作伙伴,并让社区参与者了解当地环境及其对健康的影响。通过社区会议,我们从利益相关者那里获得了重要的见解。虽然我们认为这两种工具和收集到的相关数据在科学上都不具有普遍性,但我们正在进行的工作和未来的工作都受益于从这些工具的创建和共享中学到的重要经验。
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引用次数: 0
A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals. 根据项目和伙伴关系目标选择参与式研究方法指南》。
Pub Date : 2022-01-01 Epub Date: 2022-05-23 DOI: 10.35844/001c.32605
Stephanie R Duea, Emily B Zimmerman, Lisa M Vaughn, Sónia Dias, Janet Harris

Participatory research engages community stakeholders in the research process, from problem identification and developing the research question, to dissemination of results. There is increasing recognition in the field of health research that community-engaged methods can be used throughout the research process. The volume of guidance for engaging communities and conducting participatory research has grown steadily in the past 40+ years, in many countries and contexts. Further, some institutions now require stakeholder engagement in research as a condition of funding. Interest in collaborating in the research process is also growing among patients and the public. This article provides an overview for selecting participatory research methods based on project and partnerships goals.

参与式研究让社区利益相关者参与研究过程,从发现问题、提出研究问题到传播研究成果。健康研究领域越来越认识到,社区参与的方法可用于整个研究过程。过去 40 多年来,在许多国家和环境中,有关社区参与和开展参与式研究的指南数量稳步增长。此外,一些机构现在要求利益相关者参与研究,并将此作为提供资金的一个条件。患者和公众对在研究过程中开展合作的兴趣也与日俱增。本文概述了如何根据项目和合作目标选择参与式研究方法。
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引用次数: 0
Lessons Learned From Conducting Community-Based Research on HIV Prevention With Youth During COVID-19. 在2019冠状病毒病期间开展以社区为基础的青年预防艾滋病毒研究的经验教训。
Pub Date : 2022-01-01 Epub Date: 2022-10-24 DOI: 10.35844/001c.38385
Katherine LeMasters, Allysha Maragh-Bass, Marie Stoner, Nivedita Bhushan, John Mitchell, Linda Riggins, Alexandra Lightfoot

Mitigating HIV burden among Black youth requires true community engagement. This brief report identifies challenges, strategies, and lessons learned from transitioning our three-phased, community-engaged HIV prevention project with Black youth to a remote format during COVID-19. The project involved (1) building a community-academic partnership on youth sexual health, (2) participatory youth workshops, and (3) youth surveys and interviews about HIV prevention. Feedback from community-academic partnership, pile sorting themes, and preliminary qualitative analyses guided this report. Challenges included a disruption to in-person engagement while strategies included relying heavily on pre-existing partnerships to recruit youth for interviews. We learned that pre-existing community engagement was essential for completing phase three remotely. More education is needed to support Pre-Exposure Prophylaxis (PrEP) awareness for HIV prevention and there is a need to address structural barriers to healthcare engagement such as community violence and mental illness. Community-engaged HIV research focused on youth can adapt if anchored in community relationships. Future studies must work to more fully center youth's voices and address the structural issues that may inhibit them from engaging in HIV prevention.

减轻黑人青年的艾滋病毒负担需要真正的社区参与。这份简短的报告确定了在新冠肺炎期间将我们的三阶段、社区参与的黑人青年艾滋病毒预防项目转变为远程形式所面临的挑战、战略和经验教训。该项目涉及(1)建立关于青年性健康的社区学术伙伴关系,(2)参与性青年讲习班,以及(3)关于艾滋病毒预防的青年调查和访谈。来自社区学术合作伙伴关系、堆分类主题和初步定性分析的反馈指导了本报告。挑战包括中断面对面的参与,而战略包括严重依赖现有的合作伙伴关系来招募年轻人进行面试。我们了解到,预先存在的社区参与对于远程完成第三阶段至关重要。需要更多的教育来支持暴露前预防(PrEP)对艾滋病毒预防的认识,并且需要解决医疗参与的结构性障碍,如社区暴力和精神疾病。如果立足于社区关系,以青年为重点的社区参与的艾滋病毒研究可以适应。未来的研究必须致力于更充分地集中青年的声音,并解决可能阻碍他们参与艾滋病毒预防的结构性问题。
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引用次数: 1
Shooting for the Stars: Collaborative Design for Space Education 瞄准星空:空间教育的协同设计
Pub Date : 2021-11-17 DOI: 10.35844/001c.29671
L. Svedin, Jason M. Trew
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引用次数: 0
期刊
Journal of participatory research methods
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