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Journal of participatory research methods最新文献

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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
Journal of participatory research methods 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
{"title":"Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers","authors":"N. Heyen, J. Gardecki, D. Eidt-Koch, M. Schlangen, Sophie Pauly, Olaf Eickmeier, T. Wagner, T. Bratan","doi":"10.35844/001c.35634","DOIUrl":"https://doi.org/10.35844/001c.35634","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47502137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
Journal of participatory research methods Pub Date : 2022-05-23 DOI: 10.35844/001c.35632
Lizzie Caperon, R. McEachan, Charlotte Endacott, S. Ahern
{"title":"Evaluating Community Co-Design, Maintenance and Ownership of Green Spaces in Underserved Communities Using Participatory Research","authors":"Lizzie Caperon, R. McEachan, Charlotte Endacott, S. Ahern","doi":"10.35844/001c.35632","DOIUrl":"https://doi.org/10.35844/001c.35632","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47884057","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
Journal of participatory research methods Pub Date : 2022-05-23 DOI: 10.35844/001c.35636
A. Hansen, Ida Foxvig, Gül Sakal, C. D. Klinker, Anne Sidenius
{"title":"Brief Report: Pitfalls and Potentials in Using Methods From Action Research and Systems Thinking When Engaging and Mobilizing Participants in a Community","authors":"A. Hansen, Ida Foxvig, Gül Sakal, C. D. Klinker, Anne Sidenius","doi":"10.35844/001c.35636","DOIUrl":"https://doi.org/10.35844/001c.35636","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48032793","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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-学术伙伴关系，通过社区科学提高地方环境卫生意识。
Journal of participatory research methods Pub Date : 2022-01-01 DOI: 10.35844/001c.38475
Lisa J Martin, Vincent Hill, Curtis Maples, Theresa Baker, Shereen Elshaer, Melinda Butsch Kovacic
{"title":"Shared Purpose: Leveraging a Community-Academic Partnership to Increase Local Environmental Health Awareness via Community Science.","authors":"Lisa J Martin,&nbsp;Vincent Hill,&nbsp;Curtis Maples,&nbsp;Theresa Baker,&nbsp;Shereen Elshaer,&nbsp;Melinda Butsch Kovacic","doi":"10.35844/001c.38475","DOIUrl":"https://doi.org/10.35844/001c.38475","url":null,"abstract":"<p><p>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 <i>and</i> 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.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9983642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9412134","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
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》。
Journal of participatory research methods 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
{"title":"A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals.","authors":"Stephanie R Duea, Emily B Zimmerman, Lisa M Vaughn, Sónia Dias, Janet Harris","doi":"10.35844/001c.32605","DOIUrl":"10.35844/001c.32605","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9258244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40479643","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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。
Journal of participatory research methods 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
{"title":"Lessons Learned From Conducting Community-Based Research on HIV Prevention With Youth During COVID-19.","authors":"Katherine LeMasters,&nbsp;Allysha Maragh-Bass,&nbsp;Marie Stoner,&nbsp;Nivedita Bhushan,&nbsp;John Mitchell,&nbsp;Linda Riggins,&nbsp;Alexandra Lightfoot","doi":"10.35844/001c.38385","DOIUrl":"10.35844/001c.38385","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10035063/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9199494","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
Journal of participatory research methods Pub Date : 2021-11-17 DOI: 10.35844/001c.29671
L. Svedin, Jason M. Trew
{"title":"Shooting for the Stars: Collaborative Design for Space Education","authors":"L. Svedin, Jason M. Trew","doi":"10.35844/001c.29671","DOIUrl":"https://doi.org/10.35844/001c.29671","url":null,"abstract":"","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43905235","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Participatory Microbiome Research With Hmong and Karen Communities: Lessons Learned 苗族和克伦族社区参与式微生物组研究：经验教训
Journal of participatory research methods Pub Date : 2021-11-17 DOI: 10.35844/001c.29669
Pajau Vangay, Nancy Yang, Shannon L Pergament, Mary Xiong, Bwei Paw, Rodolfo Batres, D. Knights, K. Culhane-Pera
{"title":"Participatory Microbiome Research With Hmong and Karen Communities: Lessons Learned","authors":"Pajau Vangay, Nancy Yang, Shannon L Pergament, Mary Xiong, Bwei Paw, Rodolfo Batres, D. Knights, K. Culhane-Pera","doi":"10.35844/001c.29669","DOIUrl":"https://doi.org/10.35844/001c.29669","url":null,"abstract":"In this brief report, we share lessons learned from the Immigrant Microbiome Project (IMP), a microbiome research study conducted in partnership with the Hmong and Karen communities in Minnesota. Members of the IMP academic-community research team and community advisory board reflected on the community-based participatory research (CBPR) approach used for the IMP project, which informed these lessons learned. The IMP illustrates how microbiome researchers can utilize CBPR, which can improve the validity of research projects, create respectful partnerships, build trust between community members and researchers, and ensure that research results are returned to the community as actions that can improve health.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45539655","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Appreciative Inquiry and Boot Camp Translation: Combining Methods for Community Health Improvement 赞赏性探究与训练营翻译：社区健康改善的结合方法
Journal of participatory research methods Pub Date : 2021-11-17 DOI: 10.35844/001c.29490
J. Westfall, Linda Zittleman, Maret Felzien, Jodi Summers Holtrop, Tristen Hall, M. Fisher, M. Simpson, Griselda Pena-Jackson, Donald E. Nease, Jr.
{"title":"Appreciative Inquiry and Boot Camp Translation: Combining Methods for Community Health Improvement","authors":"J. Westfall, Linda Zittleman, Maret Felzien, Jodi Summers Holtrop, Tristen Hall, M. Fisher, M. Simpson, Griselda Pena-Jackson, Donald E. Nease, Jr.","doi":"10.35844/001c.29490","DOIUrl":"https://doi.org/10.35844/001c.29490","url":null,"abstract":"","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49145012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Melding Multiple Sources of Knowledge: Using Theory and Experiential Knowledge to Design a Community Health Intervention Study 融合多种知识来源:运用理论与经验知识设计社区卫生干预研究
Journal of participatory research methods Pub Date : 2021-11-17 DOI: 10.35844/001c.29013
Mina Silberberg, L. Muhlbaier, Elaine Hart-Brothers, Glenda M. Small, A. Bunce, Rupal Patel, Seronda Robinson, S. James
{"title":"Melding Multiple Sources of Knowledge: Using Theory and Experiential Knowledge to Design a Community Health Intervention Study","authors":"Mina Silberberg, L. Muhlbaier, Elaine Hart-Brothers, Glenda M. Small, A. Bunce, Rupal Patel, Seronda Robinson, S. James","doi":"10.35844/001c.29013","DOIUrl":"https://doi.org/10.35844/001c.29013","url":null,"abstract":"","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41511052","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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