scholarly journals Developing and piloting a community scientist academy to engage communities and patients in research

2018 ◽  
Vol 2 (2) ◽  
pp. 73-78 ◽  
Author(s):  
M. Kathryn Stewart ◽  
Nicola Spencer ◽  
Anna H. Davis ◽  
Camille Hart ◽  
Beatrice Boateng
Keyword(s):  
Research Evaluation ◽  
Research Process ◽  
Community Advisory Board ◽  
Further Training ◽  
Community Members ◽  
Community Based ◽  
Evaluation Data ◽  
Community Interest ◽  
Study Implementation ◽  
Interactive Exercises

IntroductionEffective translational research requires engagement and collaboration between communities, researchers, and practitioners. We describe a community scientist academy (CSA) developed at the suggestion of our Clinical and Translational Science Awards’ (CTSA) community advisory board to engage and capacitate community members by (1) increasing community members’ and patients’ understanding about the research process and (2) increasing their access to opportunities to influence and participate in research. A joint CTSA/community planning committee developed this 8-hour workshop including sessions on: (1) research definitions and processes; (2) study design; (3) study implementation; and (4) ways to get involved in research. The workshop format includes interactive exercises, content slides and videos, and researcher and community presenters.MethodsCommunity-based information sessions allowed assessment of community interest before piloting. Two pilots of the CSA were conducted with community members and patients. Participant data and a pre/post knowledge and feedback survey provide evaluation data.ResultsThe pilot included 24 diverse participants, over half of whom had not previously participated in research. Evaluation data suggest knowledge gains. Post-CSA, one-third have reviewed CTSA pilot grants and over 80% want to attend further training.ConclusionsThe CSA can demystify the research process for those underrepresented in research and facilitate their engagement and influence within CTSAs.

scholarly journals Shifting to Virtual CBPR Protocols in the Time of Corona Virus/COVID-19

2020 ◽  
Vol 19 ◽  
pp. 160940692097731
Author(s):  
Elizabeth Salerno Valdez ◽  
Aline Gubrium
Keyword(s):  
Data Collection ◽  
Critical Time ◽  
Community Based Participatory Research ◽  
The United States ◽  
Research Process ◽  
Community Advisory Board ◽  
Community Members ◽  
Community Based ◽  
Sustainability Planning ◽  
Data Collection And Analysis

COVID-19 has upended community based participatory research (CBPR) projects across the United States and globally. COVID-19 disproportionately impacts historically disenfranchised communities and communities of color, the very communities that CBPR is meant to engage, elevate, and support. In-person activities that help develop rapport and research protocols, build capacity, conduct collaborative data collection and analysis, disseminate findings to the community, and engage in sustainability planning are an impossible practice during the COVID-19 pandemic. The purpose of this article is to describe the challenges and facilitators of shifting to a virtual/online CBPR protocol with a Massachusetts community disproportionately affected by COVID19, as a means to keep them engaged in the research process and to elevate their experiences, perspectives, and voices during this critical time. We include insights about how to facilitate recruitment and compensate community members, form a community advisory board (CAB), hold CAB meetings, and transition participatory qualitative data collection, analysis, and dissemination to a virtual/online framework.

Community-Based Participatory Research

2013 ◽  
Author(s):  
Tracey Marie Barnett
Keyword(s):  
Action Research ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Collaborative Action Research ◽  
Participatory Action ◽  
Community Members ◽  
Community Based ◽  
Community Based Research ◽  
Partnership Approach

Community-based participatory research (CBPR) embraces a partnership approach to research that equitably involves community members, organizational representatives, social workers, and researchers in all aspects of the research process. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change. It is community based in the sense that community members become part of the research team and researchers become engaged in the activities of the community. Community–researcher partnerships allow for a blending of values and expertise, promoting co-learning and capacity building among all partners, and integrating and achieving a balance between research and action for the mutual benefit of all partners. Various terms have been used to describe this research, including participatory action research (PAR), action research (AR), community based research (CBR), collaborative action research (CAR), anti-oppressive research, and feminist research.

Grounded in Culture: Reflections on Sitting Outside the Circle in Community-Based Research With Indigenous Men

2020 ◽  
Vol 30 (14) ◽  
pp. 2343-2350
Author(s):  
Candice M. Waddell ◽  
Rachel V. Herron ◽  
Jason Gobeil ◽  
Frank Tacan ◽  
Margaret De Jager ◽  
...  
Keyword(s):  
Mental Health ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Power Dynamics ◽  
Indigenous Research ◽  
Community Members ◽  
Community Based ◽  
Community Based Research ◽  
Research Paradigms ◽  
Reflexive Practice

Research continues to be a dirty word for many Indigenous people. Community-based participatory research (CBPR) is a means to disrupt power dynamics by engaging community members within the research process. However, the majority of relationships between researcher and participants within CBPR are structured within Western research paradigms and they often reproduce imbalances of power. The purpose of this article is to reflect on the process of CBPR within a research project focused on Indigenous men’s masculinity and mental health. In doing so, we aim to contribute to reflexive practice in CBPR and flatten research hierarchies to facilitate more equitable knowledge sharing. Our reflections highlight the importance of prioritizing healing, centering cultural protocols, negotiating language, and creating space for Indigenous research partners to lead. These critical lessons challenge Western researchers to ground their practices in Indigenous culture while they “sit outside the circle” to facilitate more equitable and engaged partnerships.

scholarly journals Caught up in power: Exploring discursive frictions in community research

2016 ◽  
Vol 9 (1) ◽  
Author(s):  
Cindy Hanson ◽  
Adeyemi Ogunade
Keyword(s):  
Research Process ◽  
Community Research ◽  
Power Dynamics ◽  
Power Relationships ◽  
Community Members ◽  
Community Based ◽  
Community Based Research ◽  
Research Outcomes ◽  
Power Asymmetries ◽  
Research Relationships

This article outlines the debate around the emancipatory claims of community-based research (CBR) and identifies discursive frictions as a pivotal point upon which much of CBR practice revolves. Using a Foucauldian theoretical lens, we suggest that CBR is neither inherently emancipatory nor repressive, but that research outcomes are more often a product of power asymmetries in CBR relationships. To illustrate how power asymmetries in research relationships produce discursive frictions, several studies from our work and the literature are presented. The article provides examples of CBR relationships between the researcher and community members and relationships within the community to illustrate how power asymmetries and discursive frictions in these relationships dynamically influence research outcomes and thus alert researchers to the need to address power asymmetries not just before initiating CBR projects, but during CBR projects as well. We interrogate how power asymmetries and discursive frictions operate and are constructed in CBR in an attempt to highlight how research might be conducted more effectively and ethically. Finally, we indicate that some of the tensions and challenges associated with CBR might be ameliorated by the use of participatory facilitation methodologies, such as photo-voice and story circle discussion groups, that draw attention to power asymmetries and purposefully use more creative participatory tools to restructure power relationships and ultimately address the inequities that exist in the research process. Because CBR is continually caught up in power dynamics, we hope that highlighting some examples might offer an opportunity for increased dialogue and critical reflection on its claims of empowerment and emancipation.Keywords: discursive friction, Foucault, participatory methodologies, power asymmetries, research relationships, emancipatory research  

Lessons from a community-based participatory research study with transgender and gender nonconforming youth and their families

2018 ◽  
Vol 17 (2) ◽  
pp. 186-207 ◽  
Author(s):  
Sabra L Katz-Wise ◽  
Annie Pullen Sansfaçon ◽  
Laura M Bogart ◽  
Milagros C Rosal ◽  
Diane Ehrensaft ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Well Being ◽  
Research Process ◽  
Lessons Learned ◽  
Community Partner ◽  
Community Members ◽  
Community Based ◽  
Gender Nonconforming ◽  
And Gender

Community-based participatory research (CBPR) involves community members collaborating with academic investigators in each step of the research process. CBPR may be especially useful for research involving marginalized populations with unique perspectives and needs. In this paper, we discuss successes and challenges of using a CBPR approach for the Trans Teen and Family Narratives Project, a longitudinal mixed-methods study to examine how the family environment affects the health and well-being of transgender and gender nonconforming youth. We describe considerations for using a CBPR approach with this population, including defining the community of transgender and gender nonconforming youth and families, engaging the community in the research process, managing conflicting agendas for community partner meetings, addressing insider/outsider status of the researchers, resolving researcher/community tensions regarding data collection tools, integrating academic and community members into a cohesive research team, developing safety plans to address participant suicidality disclosures, and differentiating the role of academics as researchers vs. advocates. We conclude by sharing lessons learned, which can inform future research to address the needs of transgender and gender nonconforming youth and families.

scholarly journals “Spirit, Safety, and a Stand-off ”: The Research-Creation Process and Its Roles in Relationality and Reconciliation among Researcher and Indigenous Co-Learners in Saskatchewan, Canada

2019 ◽  
Vol 5 (2) ◽  
pp. 37-60
Author(s):  
Myron Neapetung ◽  
Lori Bradford ◽  
Lalita Bharadwaj
Keyword(s):  
First Nations ◽  
Research Process ◽  
Lessons Learned ◽  
Research Information ◽  
Community Members ◽  
Translation Process ◽  
Community Based ◽  
Community Ownership ◽  
Research Findings ◽  
Nations Community

Provision of safe water on reserves is an ongoing problem in Canada that can be addressed by mobilizing water knowledge across diverse platforms to a variety of audiences. A participatory artistic animation video on the lived experiences of Elderswith water in Yellow Quill First Nation, Treaty Four territory, was created to mobilize knowledge beyond conventional peer-review channels. Research findings from interviews with 22 Elders were translated through a collaborative process into a video with a storytelling format that harmonized narratives, visual arts, music, and meaningful symbols. Three themes emerged which centered on the spirituality of water, the survival need for water, and standoffs in water management. The translation process, engagement and video output were evaluated using an autoethnographic approach with two members of the research team. We demonstrate how the collaborative research process and co-created video enhance community-based participatory knowledge translation and sharing. We also express how the video augments First Nations community ownership, control, access and possession (OCAP) of research information that aligns with their storytelling traditions and does so in a youth-friendly, e-compatible form. Through the evaluative process we share lessons learned about the value and effectiveness of the video as a tool for fostering partnerships, and reconciliation. The benefits and positive impacts of the video for the Yellow Quill community and for community members are discussed.

Community-Based Participatory Research

2020 ◽  
Author(s):  
Michael Duke
Keyword(s):  
Social Justice ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
The United States ◽  
Research Process ◽  
Cultural Humility ◽  
Community Members ◽  
Community Based ◽  
Advisory Boards ◽  
Rapport Building

Community-based participatory research (CBPR) refers to a methodological and epistemological approach to applied community projects in which researchers and community members collaborate as equals in the research process. Also known as participatory action research (PAR), CBPR has gained considerable acceptance both as a set of methods for identifying and addressing local issues of concern and as a vehicle for applying the principles of equity, cultural humility, mutual learning, and social justice to the relationships between researchers and communities. Although somewhat distinct from applied anthropology, CBPR shares with ethnography in particular an attentiveness to rapport building and community engagement and an overall validation of local knowledge. There is little consensus regarding the threshold of community participation necessary for a given research project to be considered CBPR. However, at a minimum the approach requires that community members define the problems to be assessed, provide consultation on the cultural and social dimensions of the study population, and serve in an advisory capacity over the entire project. The history of CBPR and its antecedents reflects its twin values as a pragmatic approach to researching and addressing local problems and as an emancipatory social justice project that seeks to diminish the hierarchical relationship between researchers and community members. Specifically, the pragmatic perspective was developed in the United States by social psychologist Kurt Lewin in the 1930s (and subsequently by the anthropologists Laura Thompson and Sol Tax), while the emancipatory approach derives from the work of educational theorist Paulo Freire in Brazil in the 1970s. Community Advisory Boards (CABs) play an outsized role in the success of CBPR projects, since they typically represent the community in these studies, and thus maintain oversight over all aspects of the research process, including the study design, sampling and recruitment protocols, and the dissemination of findings. Accordingly, nurturing and maintaining trust between researchers, the CAB, and the community constitutes a foundational practice for any CBPR study.

Community-Based Research

2014 ◽  
pp. 484-517
Author(s):  
Margaret R. Boyd
Keyword(s):  
Research Process ◽  
Research Paradigm ◽  
Research Partnership ◽  
Community Members ◽  
Multiple Stakeholders ◽  
Community Based ◽  
Community Based Research ◽  
Traditional Research ◽  
Emerging Issues ◽  
Synergistic Relationship

Community-based research challenges the traditional research paradigm by recognizing that complex social problems today must involve multiple stakeholders in the research process—not as subjects but as co-investigators and co-authors. It is an “orientation to inquiry” rather than a methodology and reflects a transdisciplinary paradigm by including academics from many different disciplines, community members, activists, and often students in all stages of the research process. Community-based research is relational research where all partners change and grow in a synergistic relationship as they work together and strategize to solve issues and problems that are defined by and meaningful to them. This chapter is an introduction to the historical roots and subdivisions within community-based research and discusses the core principles and skills useful when designing and working with community members in a collaborative, innovative, and transformative research partnership. The rationale for working within this research paradigm is discussed as well as the challenges researchers and practitioners face when conducting community-based research. As the scholarship and practice of this form of research has increased dramatically over the last twenty years, this chapter looks at both new and emerging issues as well as founding questions that continue to be debated in the contemporary discourse.

scholarly journals The Community Lab of Ideas for Health: Community-Based Transdisciplinary Solutions in a Malaria Elimination Trial in The Gambia

2021 ◽  
Vol 9 ◽  
Author(s):  
Yoriko Masunaga ◽  
Fatou Jaiteh ◽  
Ebrima Manneh ◽  
Julie Balen ◽  
Joseph Okebe ◽  
...  
Keyword(s):  
Malaria Elimination ◽  
Health Workers ◽  
Stakeholder Analysis ◽  
Monitoring And Evaluation ◽  
Research Process ◽  
The Gambia ◽  
Community Members ◽  
Community Based ◽  
Unequal Distribution ◽  
Trial Implementation

Background: Community participation in global health interventions may improve outcomes and solve complex health issues. Although numerous community participatory approaches have been developed and introduced, there has been little focus on “how” and “who” to involve in the implementation of community-based clinical trials where unequal distribution of power between implementers and communities pre-exists. Addressing how to achieve community-based solutions in a malaria elimination trial in The Gambia, we developed the Community Lab of Ideas for Health (CLIH): a participatory approach that enabled communities to shape trial implementation.Methods: As part of transdisciplinary research, we conducted qualitative research with in-depth interviews, discussions, and observations in 17 villages in the North Bank Region of The Gambia between March 2016 and December 2017. We designed an iterative research process involving ethnography, stakeholder-analysis, participatory-discussions, and qualitative monitoring and evaluation, whereby each step guided the next. We drew upon ethnographic results and stakeholder-analysis to identify key-informants who became participants in study design and implementation. The participatory-discussions provided a co-creative space for sharing community-centric ideas to tackle trial implementation challenges. The proposed strategies for trial implementation were continuously refined and improved through our monitoring and evaluation.Results: The CLIH incorporated communities' insights, to co-create tailored trial implementation strategies including: village health workers prescribing and distributing antimalarial treatments; “compounds” as community-accepted treatment units; medicine distribution following compound micro-politics; and appropriate modes of health message delivery. Throughout the iterative research process, the researchers and communities set the common goal, namely to curtail the medical poverty trap by reducing malaria transmission and the burden thereof. This innovative collaborative process built trust among stakeholders and fully engaged researchers and communities in co-creation and co-implementation of the trial.Discussion: The CLIH approach succeeded in touching the local realities by incorporating a spectrum of perspectives from community-members and discerning project-derived knowledge from local-knowledge. This process allowed us to co-develop locally-oriented solutions and ultimately to co-establish an intervention structure that community-members were ready and willing to use, which resulted in high uptake of the intervention (92% adherence to treatment). Successfully, the CLIH contributed in bridging research and implementation.

Community Advisory Board Members’ Perspectives Regarding Opportunities and Challenges of Research Collaboration

2017 ◽  
Vol 40 (7) ◽  
pp. 1032-1048 ◽  
Author(s):  
Mary E. Cramer ◽  
Stephen Lazoritz ◽  
Ken Shaffer ◽  
David Palm ◽  
Amy L. Ford
Keyword(s):  
Research Collaboration ◽  
Academic Research ◽  
Research Process ◽  
Shared Vision ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Evidence Based ◽  
Community Based ◽  
Research Partnerships ◽  
Self Evaluation

This case study examines the perspectives of rural community advisory board (CAB) members regarding the opportunities and challenges of partnering with academic investigators on funded research. We used a sequential exploratory design to evaluate the phenomena. Qualitative and quantitative data from CAB members were integrated to gain better understanding. Results showed that CAB members valued professional networking and gaining new evidence-based knowledge to enhance their professional practices. They identified rurality, the academic research process, and fulfilling research roles as the most significant challenges. CAB members also believed that strong community-based leaders had been essential in promoting and sustaining a shared vision for evidence-based research solutions to their community problem. Self-evaluation is essential for effective CAB research partnerships, and nurse researchers can strengthen these collaborations by (a) providing continuing education on research and evidence-based practices, (b) assuring that perceived benefits of CAB participation outweigh perceived challenges, and (c) supporting community-based leadership.

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