Journal of participatory research methods最新文献

{"title":"Stinging Stigma in Healthcare Symposium: A Participatory Approach to Disseminating Research and Strengthening Community.","authors":"J Richelle Joe, Andrea Dunn, Shan-Estelle Brown, Makella Coudray, Cassandra Davis, Delrae Hartsfield, Whitney Marshall, Mikaela Mendoza-Cardenal, Dreysa Skinner, Ida Starks, Tiesha Williams, Karen Wint","doi":"10.35844/001c.161623","DOIUrl":"10.35844/001c.161623","url":null,"abstract":"<p><p>Typical research dissemination involves peer-reviewed publications and professional presentations targeting scholarly audiences. However, community-engaged health equity research requires innovative and community-centered dissemination approaches to ensure that research findings reach affected individuals and communities. Community-engaged research conferences are one such approach. This article provides guidance for planning and delivering a community-engaged research conference and uses the Stinging Stigma in Healthcare Symposium as an exemplar. This two-day event for healthcare providers and community members facilitated the dissemination of research focused on the sexual health and HIV prevention needs of Black women in Orange County, Florida. We discuss the formation of a planning committee, the steps in the planning process, and recommendations for researchers interested in using a symposium to disseminate their research.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"7 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13523039/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148851442","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}

{"title":"Disseminating Research Results to Raise Awareness About Child Farmworker Health Through Youth-Driven Participatory Infographics.","authors":"Taylor J Arnold, Maria Juarez, Ramon Zepeda, Vanessa Gonzalez, Elber Lopez Paz, Fidel Jaramillo-Plata, Sylvia Zapata, Sara A Quandt, Thomas A Arcury, Stephanie S Daniel","doi":"10.35844/001c.159444","DOIUrl":"10.35844/001c.159444","url":null,"abstract":"<p><p>Despite increased emphasis on disseminating research results beyond academic outlets, effective dissemination to non-academic audiences remains a challenge. We describe a collaborative, youth-driven participatory approach to developing infographics for sharing research results from a study on the health and safety of hired Latine child farmworkers in North Carolina. Academic investigators partnered with rural youth from farmworker families participating in a youth leadership program. We detail the step-by-step infographic development and dissemination process and reflect on lessons we learned throughout the partnership. This approach demonstrates the potential for adapting youth-driven infographic development processes to diverse research and practice settings, ultimately increasing the utility and uptake of research findings in community settings.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"7 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13379155/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148581529","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}

{"title":"Implementation Strategies for Strengthening Community and Stakeholder Engagement in Clinical and Translational Pilot Studies.","authors":"Sarah K Brewer, Siyu Chen, Thomas W Concannon, Robert D Sege, Alice Rushforth, Aviva Must, Nadia Prokofieva, Lisa C Welch","doi":"10.35844/001c.167216","DOIUrl":"10.35844/001c.167216","url":null,"abstract":"<p><p>This article details participatory strategies in modestly funded, short-term studies that shape larger clinical and translational research. Specifically, we document engagement practices and strategies used in small-scale pilot studies for which the funder required applicants have a community and stakeholder engagement (CSE) plan. Drawing on the broadly-engaged team science framework, we identify practices that facilitate engagement in these studies, challenges, and potential strategies for addressing identified challenges. Investigators can implement many of the identified practices and strategies, whereas others require system-level changes by funders and/or research support organizations. At the project level, investigator practices that facilitate initial engagement include seeking alignment between stakeholder priorities and study goals and using existing personal and professional networks. Sustained and valuable CSE is enabled by drawing on relevant stakeholder expertise, clear PI communication, and building collaborative teams. Challenges and potential solutions include conducting effective team meetings, particularly with larger groups, which could be optimized by building and sustaining authentic stakeholder relationships prior to online interactions. Additionally, seeking to understand and be responsive to stakeholders' perspectives on what makes engagement meaningful - at the beginning and throughout the study - is essential to build trust and facilitate productive and authentic engagement. Funders and research support organizations play important roles in shaping a research context conducive to authentic stakeholder participation. For example, investigators experience challenges with engagement throughout a study lifecycle, and research support organizations can provide accessible CSE expertise. Establishing new stakeholder contacts is a barrier for many investigators, and funders and research support organizations can address this by training investigators, facilitating connections, and preparing stakeholders for engagement. Insufficient CSE funding, limited stakeholder capacity, and barriers to non-scientist engagement due to standard research practices present additional obstacles that require funders to promote the cultural change required to foster engagement. These participatory strategies and recommendations can facilitate the implementation of CSE into the full translational process by beginning with preliminary studies.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"7 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13588279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149009456","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}

{"title":"Sharing Back, Listening Forward: Participatory Dissemination in a Tribal Community.","authors":"Monica C Skewes, Julie A Gameon, Paula FireMoon","doi":"10.35844/001c.160045","DOIUrl":"10.35844/001c.160045","url":null,"abstract":"<p><p>Community-Based Participatory Research (CBPR) is a partnership approach to research that involves the community in all aspects of the research process, from study design and implementation to interpretation and dissemination of findings. Participatory dissemination is a key aspect of CBPR scholarship that increases the potential for research to benefit the community. Our CBPR partnership was formed in 2014 with the goal of understanding and addressing substance use in a rural American Indian community. After developing our partnership and assembling a Community Advisory Board, we conducted a qualitative key informant interview study to gain a deeper understanding of addiction and recovery on the reservation. As participatory dissemination of research findings was a priority for our team, we decided to host an interactive community gathering to share the findings and receive feedback on the project from the community. In this manuscript, we describe the circumstances surrounding this community forum, the format and structure of the gathering, strengths of our approach, and lessons we learned throughout the process. We also offer guidance for other CBPR scholars interested in adapting our dissemination approach for other cultures and communities. Six primary teachings from our experience include: 1) know the community, culture, and customs; 2) connect dissemination to local current events; 3) make research findings accessible; 4) translate the importance of the research; 5) trust the community partners; and 6) be a good relative. Through genuine partnership and a true commitment to being good relatives to one another, research can achieve the beneficial impacts we intend.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"7 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13249464/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148221217","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}

{"title":"The Report of Engagement in Community Research (REACH) Tool: A Strategy to Promote Transparency and Improve Planning in Community-Engaged Research.","authors":"Farrah Jacquez, Lisa Vaughn","doi":"10.35844/001c.140734","DOIUrl":"10.35844/001c.140734","url":null,"abstract":"<p><p>Community engagement is increasingly recognized as essential for producing impactful and ethical research outcomes. However, the field lacks a standardized, consistently used method to document community involvement, hindering transparency and accountability in the research process. To address this gap, we have developed a novel tool, the Report of Engagement in Community Research (REACH), to provide clarity on the extent, nature, and timing of community involvement in research endeavors. Unlike conventional methods that often offer vague descriptions of community participation, the REACH tool enables research teams to articulate precisely how and when community members are engaged, their specific research roles, and their level of involvement. By offering a concise, visual, structured framework, REACH empowers researchers to transparently communicate the depth and breadth of community collaboration within their projects. Using the REACH tool results in a stylized graph that describes when and what research activities community members were involved in and the extent of their collaboration. Community-academic research teams can use REACH not only to retrospectively explain community contributions to research but also to proactively plan research roles in equitable, realistic ways. By promoting transparency and accountability, the REACH tool contributes to the development of more inclusive, impactful, and ethically sound research practices. As a versatile and user-friendly tool, REACH has the potential to catalyze transformative changes in the way community-engaged research is conducted, communicated, and replicated.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"6 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12857856/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146108947","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}

{"title":"The 10-Step Cross-cultural Equivalence Process for Developing Measures for Culturally Informed Research.","authors":"Jennifer J Connor, Zahra Sheik, Shannon Pergament, Cawo Abdi, Crista E Johnson-Agbakwu, Beatrice B E Robinson","doi":"10.35844/001c.144211","DOIUrl":"10.35844/001c.144211","url":null,"abstract":"<p><p>We describe a comprehensive ten step process for choosing and adapting existing scales or questionnaires to the Somali language for the Our Body Our Health (OBOH) study. The OBOH study aims to examine sexual pain, coping with pain, sexual health, and decision-making in a sample of Somali women living in the United States and have experienced female genital cutting (FGC). We describe how we used existing guidelines for construct equivalence, semantic equivalence, technical equivalence and translation, while also expanding on these guidelines by engaging community members through a variety of mechanisms. We also used an iterative process where decisions were made, refined, and sometimes overturned as we gathered more community driven feedback. Through this process we adapted 11 scales, created three questionnaires, and translated all. We considered five other scales and describe the reasons we did not use them for the final survey. Finally, we present lessons learned and recommendations for other researchers.</p>","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"6 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13221084/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148140040","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}

{"title":"Editorial: ”How Communities and Research Institutions Work Together to Dismantle Structural Racism and Advance Health Equity”","authors":"J. R. Moon, Ann M. Brearley, Drissa M. Toure","doi":"10.35844/001c.121132","DOIUrl":"https://doi.org/10.35844/001c.121132","url":null,"abstract":"","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"126 18","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141811258","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}

{"title":"Retention Reimagined: Participatory Action and Positive Deviancy for University Student Success","authors":"A. Nakonechnyi, Brook Batch, N. Douglas, Ciara Tucker, Alexa Theuerling, Matthew Knox, Rebecca Allen","doi":"10.35844/001c.94415","DOIUrl":"https://doi.org/10.35844/001c.94415","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"376 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140778780","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}

{"title":"The RESPCCT Study: Community-led Development of a Person-Centered Instrument to Measure Health Equity in Perinatal Services","authors":"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","doi":"10.35844/001c.94399","DOIUrl":"https://doi.org/10.35844/001c.94399","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"143 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140764056","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}

{"title":"Amplifying Youth Voices Using Digital Technology: A Case Study in Collaborative Research With Youth Service Organizations","authors":"Rachel M. Magee, Amy M. Leman, Gowri Balasubramaniam","doi":"10.35844/001c.92282","DOIUrl":"https://doi.org/10.35844/001c.92282","url":null,"abstract":"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.","PeriodicalId":73887,"journal":{"name":"Journal of participatory research methods","volume":"142 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140766883","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}