Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research (...) by introducing a collaborative process meant to encourage increased participation by special populations and narrow the parity gap in effective mental health treatment and services delivery. (shrink)

Conventional, positivist science is not well suited for addressing the contemporary risk landscape. To address high-uncertainty, high-stakes risks, Funtowicz and Ravetz have called for a postnormal science. Two key characteristics of postnormal science are the involvement of an extended peer community and the deliberation of extended facts. The health research community has responded to the shortcomings of normal science with approaches to field research, known collectively as community-based participatory research. A review of (...) case literature shows that although CBPR is not inherently postnormal, it can be friendly to a postnormal approach. A postnormal CBPR practice would rely more heavily on a deliberative process, which engages a broad range of expertise, including experts in normal science, in decisions about data collection, analysis, and actions. (shrink)

FOSTER J, CHIANG F, HILLARD RC, HALL P and HEATH A. Nursing Inquiry 2010; 17: 309–316 Team process in community‐based participatory research on maternity care in the Dominican RepublicA cross‐cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery community‐based participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. (...) The purpose of the study was to understand community perceptions of maternity services. This article highlights the activities that the research team carried out during each phase of the research process, and how they established team identity, team trust, and team efficacy. This research has created a platform for new avenues for health providers and community to partner to improve maternal‐newborn care. Community‐based participatory research is one way forward to address the past and present inequities constitutive of global health disparities. (shrink)

We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect to projects (...) and individuals who engage in community-based collaborations. The differences that arose from the interviews were seeking equality between the partners, the need for the community partner to defend the community, dealing with unflattering data, meeting community expectations and producing tangible benefits to the community. (shrink)

Community-based participatory research is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with (...) HIV and addictions issues. The structure of hospital-based care delivery required the team to account for participants’ health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process. (shrink)

MENDENHALL TJ, BERGE JM, HARPER P, GREENCROW B, LITTLEWALKER N, WHITEEAGLE S and BROWNOWL S. Nursing Inquiry 2010; 17: 359–372 The Family Education Diabetes Series (FEDS): community‐based participatory research with a midwestern American Indian communityIndigenous people around the globe tend to struggle with poorer health and well‐being than their non‐indigenous counterparts. One area that this is especially evident is in the epidemic of diabetes in North America’s American Indians (AIs) – who evidence higher prevalence rates and (...) concomitant disease‐related complications than any other racial/ethnic group. As researchers and AI communities work together to transcend conventional top‐down, service‐delivery approaches to care, community‐based participatory research is beginning to show promise as a way to partner contemporary biomedical knowledge with the lived‐experience, wisdom, and customs of Indigenous people. This study describes the Family Education Diabetes Series (FEDS) as an example of such effort, and highlights pilot findings assessing its value and impact across key diabetes‐relevant variables. Following 36 intervention participants across baseline, 3‐month, and 6‐month time periods, data show significant improvements in weight, blood pressure, and metabolic control (A1c). Strengths and limitations of this investigation are presented, along with suggestions about how to further advance and empirically test the work across other Indigenous communities. (shrink)

MOHAMMED SA, WALTERS KL, LAMARR J, EVANS‐CAMPBELL T and FRYBERG S. Nursing Inquiry 2012; 19: 116–127 [Epub ahead of print]Finding middle ground: negotiating university and tribal community interests in community‐based participatory researchCommunity‐based participatory research (CBPR) has been hailed as an alternative approach to one‐sided research endeavors that have traditionally been conducted on communities as opposed to with them. Although CBPR engenders numerous relationship strengths, through its emphasis on co‐sharing, mutual benefit, and (...) class='Hi'>community capacity building, it is often challenging as well. In this article, we describe some of the challenges of implementing CBPR in a research project designed to prevent cardiovascular disease among an indigenous community in the Pacific Northwest of the United States and how we addressed them. Specifically, we highlight the process of collaboratively constructing a Research Protocol/Data Sharing Agreement and qualitative interview guide that addressed the concerns of both university and tribal community constituents. Establishing these two items was a process of negotiation that required: (i) balancing of individual, occupational, research, and community interests; (ii) definition of terminology (e.g., ownership of data); and (iii) extensive consideration of how to best protect research participants. Finding middle ground in CBPR requires research partners to examine and articulate their own assumptions and expectations, and nurture a relationship based on compromise to effectively meet the needs of each group. (shrink)

This paper focuses on ethics in community-based participatory research (CBPR) from inception to post-publication. Central to CBPR is a collaborative, partnership approach that recognises the strengths of partners and engages their distinctive voice and knowledge in the research process. While the ethical complexities that arise in the course of research practice in CBPR can transcend individual projects, they are also grounded in the particularity of the project, community, and research partners. This paper (...) reflects on the experiences of two participatory social policy research projects on housing in Ireland, conducted over the past three years. These projects involved collaborating with older people living in rural areas nationwide and with residents of small communities on offshore islands. The paper explores the ethics of engagement (regarding methods of involvement and access), and the ethics of representation (incorporating the depiction and sharing of research findings) and argues that researchers must pay attention to the specificity of each project and be alive to generating an organic research ethics in how research is set up, conducted, represented, and disseminated. In so doing, we can better foster agency and authenticity in the relationships developed throughout research processes and reflect on and meet shared values and responsibilities. (shrink)

Mistrust and fear of research often exist in minority communities because of assumptions, preconceived ideas, and historical abuse and racism that continue to influence research participation. The research establishment is full of well-meaning ‘outsider’ investigators who recognize discrimination, health disparities, and insufficient health care providers in minority communities, but struggle in breaking through this history of mistrust. This article provides ethical insights from one such ‘insider-outsider’, community-based participatory research project implemented via community (...) health advisors in the Mississippi Delta. Both community-based participatory research and community health advisors provide opportunities to address the ethical issues of trust, non-maleficence, and justice in minority communities. Implications for ethics-driven nursing research are discussed. (shrink)

Community based participatory research is an effective tool in engaging under-represented minorities in research. To be successful, CBPR must be culturally sensitive, re...

This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as a model for (...) two follow-up projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

“Participatory research” is an umbrella term for a wide variety of scientific research projects that include participation of members of the lay public beyond simply using humans as “subjects” of research. In this chapter, we begin by surveying the variety of participatory research approaches across fields. We examine the goals of participatory research projects, including social and scientific value. Next, we apply a theoretical framework to challenges that participatory research faces. (...) We then survey three typologies of participatory research projects, each of which can illuminate and guide decisions in project development. We end by looking at participatory research approaches in health contexts, applying the theoretical resources we introduced earlier in the chapter. (shrink)

Ethics in participatory research -- Partnership, collaboration and power -- Blurring the boundaries between researcher and researched, academic and activist -- Community rights, conflict and democratic representation -- Co-ownership, dissemination and impact -- Anonymity, privacy, and confidentiality -- Institutional ethical review processes -- Social action for social change.

BackgroundDrug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional (...) ethics review boards. We conducted a scoping review to identify ethical issues in CBPR with people who use drugs that were documented in peer-reviewed and grey literature.MethodsThe search strategy focused on three areas; community-based research, ethical issues, and drug use. Searches of five academic databases were conducted in addition to a grey literature search, hand-searching, and consultation with organizational partners and key stakeholders. Peer reviewed literature and community reports published in English between 1985 and 2013 were included, with initial screening conducted by two reviewers.ResultsThe search strategy produced a total of 874 references. Twenty-five references met the inclusion criteria and were included in our thematic analysis. Five areas were identified as important to the ethics of CBPR with people who use drugs: 1) participant compensation, 2) drug user perspectives on CBPR, 3) peer recruitment and representation in CBPR, 4) capacity building, and 5) participation and inclusion in CBPR.ConclusionsWe critically discuss implications of the emerging research in this field and provide suggestions for future research and practice. (shrink)

BackgroundIdentifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles.MethodsUsing a scoping review methodology, we identified (...) and evaluated seven studies using CBPR principles in biomarker discovery.Results and conclusionsThe limited number of studies in biomarker discovery adopting CBPR principles coupled with their methodological limitations suggests that such applications are feasible but challenging. These studies illustrate three CBPR themes: community assessment, setting global priorities, and collaboration in research design. We propose that further research using participatory principles would be useful in accelerating the pace of discovery and the development of clinically meaningful biomarkers. For this goal to be successful we advocate for increased attention to previously identified conceptual and methodological challenges to participatory approaches in health research, including improving scientific rigor and developing long-term partnerships among stakeholders. (shrink)

This book shows how participatory research can provide tools to overcome the current epistemic and ethical challenges faced by traditional scientific approaches. Ever since Funtowicz and Ravetz proposed the notion of post-normal science, there has been a growing awareness of the limits of a form of knowledge production based only on the traditional scientific peer communities that excludes other social groups affected by its results and applications. The growing uncertainty and complexity posed by socio-ecological issues in the (...) interactions between science, society and decision making has revealed the importance of a social quality control over crucial decisions that rely on scientific research and the necessary democratization of knowledge to tackle sustainability and health concerns. Departing from a reinterpretation of Paulo Freire’s Pedagogy of the Oppressed, this volume shows how participatory research can contribute to reconnect science and society by extending peer communities through the incorporation of different forms of knowledge and different social actors into research projects. To do so, the author presents a critical review of different participatory research approaches, identifying the elements that distinguish a true participatory research from a traditional one, and proposing a taxonomy of the various participatory methodologies. The volume also analyzes a diversity of social practices and understandings that deal with an ecology of knowledge and its systemic characteristics. Moreover, it demonstrates that uncertainties can be integrated in dialogical processes that open possibilities for a myriad of outcomes. Participatory Research in the Post-Normal Age - Unsustainability and Uncertainties to Rethink Paulo Freire's Pedagogy of the Oppressed will be of interest to researchers working with participatory approaches in different fields like health, environmental sciences, and education, as well as to practitioners of action research concerned with scientific dilemmas and counter-hegemonic strategies. (shrink)

BackgroundA requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed.AimsThe aims of this study were to assess the extent to which parents providing consent for children's participation in an observational tuberculosis (TB) research study in India actively participated during the informed consent discussion, and to identify correlates of that participation.MethodsIn an observational (...) cohort study of tuberculosis in infants in South India, field supervisors who were responsible for obtaining informed consent noted down questions asked during the informed consent discussions for 4,382 infants who were enrolled in the study. These questions were post-coded by topic. Bivariate and multivariate analysis was conducted to examine factors associated with asking at least one question during the informed consent process.ResultsIn total, 590 out of 4,382 (13.4%) parents/guardians asked any question during the informed consent process. We found that the likelihood of parents asking questions during the informed consent process was significantly associated with education level of either parent both parents being present, and location.ConclusionsThe findings have implications for planning the informed consent process in a largely rural setting with low levels of literacy. Greater effort needs to be directed towards developing simple participatory communication materials for the informed consent process. Furthermore, including both parents in a discussion about a child's participation in a research study may increase the extent to which consent is truly informed. Finally, continuing efforts need to be made to improve the communication skills of research workers with regard to explaining research processes and putting potential research participants at ease. (shrink)

This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New (...) Zealand Ethics Committee, formed in 2012, responds to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research. (shrink)

Many reviewers of applications for ethical approval of research at universities struggle to understand what is considered ethical conduct in community-based research (CBR). Their difficulty in understanding CBR and the ethics embedded within it is, in part, due to the exclusion of CBR from researchers’ mandatory research ethics training. After all, CBR challenges both pedagogically and epistemologically the dominant paradigm/s whose worldviews, values and inherent structures of power help sustain the status quo within academic institutions (...) at large. Consequently, CBR ethics applications are often prolonged due to back-and-forth rebuttals. In this article, we analyse our experiences in a South African institution of the ethics approval process for our various CBR projects over the past couple of years. Data for this purpose was generated from analysis of our reflexive dialogues as well as our responses to feedback from the ethics review boards. To help support the trustworthiness of the study, we invited critical friends to a workshop to engage with our findings. We identified three main themes all associated with how the values, worldviews and approaches of CBR differ from those of the dominant research paradigm/s, that impeded on the progress of our applications through the ethics approval process. On the basis of our analysis, we offer guidelines and a participatory research checklist for university ethics review panels to help inform their evaluation of applications concerning CBR. While universities now actively promote community engagement initiatives, and since CBR is an efficacious approach to that end, we advocate for inclusion of CBR ethics in universities’ mandatory ethics training, to help address ethical concerns that impede CBR research. (shrink)

Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy collaboratively (...) developed by researchers and study communities in a multicountry study. The study was carried out in two research naïve communities; Gwanda, Zimbabwe and uMkhanyakude, South Africa. The multicentre study was a community based participatory ecohealth multicentre study. A qualitative case study approach was used to explore the CE strategy. Data was collected through Focus Group Discussions, Key Informant Interviews and Direct Observations. Data presented in this paper was collected at three stages of the community engagement process; soon after community entry, soon after sensitisation and during study implementation. Data was analysed through thematic analysis. The communities generally had positive experiences of the CE process. They felt that the continuous solicitation of their advice and preferences enabled them to significantly contribute to shaping the engagement process. Communities also perceived the CE process as having been flexible, and that the researchers had presented an open forum for sharing responsibilities in all decision making processes of the engagement process. This study has demonstrated that research naïve communities can significantly contribute to research processes if they are adequately engaged. The study also showed that if researchers put in maximum effort to demystify the research process, communities become empowered and participate as partners in research. (shrink)

Background Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy (...) collaboratively developed by researchers and study communities in a multicountry study. Methods The study was carried out in two research naïve communities; Gwanda, Zimbabwe and uMkhanyakude, South Africa. The multicentre study was a community based participatory ecohealth multicentre study. A qualitative case study approach was used to explore the CE strategy. Data was collected through Focus Group Discussions, Key Informant Interviews and Direct Observations. Data presented in this paper was collected at three stages of the community engagement process; soon after community entry, soon after sensitisation and during study implementation. Data was analysed through thematic analysis. Results The communities generally had positive experiences of the CE process. They felt that the continuous solicitation of their advice and preferences enabled them to significantly contribute to shaping the engagement process. Communities also perceived the CE process as having been flexible, and that the researchers had presented an open forum for sharing responsibilities in all decision making processes of the engagement process. Conclusions This study has demonstrated that research naïve communities can significantly contribute to research processes if they are adequately engaged. The study also showed that if researchers put in maximum effort to demystify the research process, communities become empowered and participate as partners in research. (shrink)

D’ALONZO KT. Nursing Inquiry 2010; 17: 282–288 Getting started in CBPR: lessons in building community partnerships for new researchersThere is a growing interest in community‐based participatory research (CBPR) methods to address issues of health disparities. Although the success of CBPR is dependent upon the formation of community‐researcher partnerships, new researchers as well as seasoned investigators who are transitioning to CBPR often lack the skills needed to develop and maintain these partnerships. The purpose of the (...) article is to discuss the competencies needed by new researchers to form successful CBPR partnerships. The author presents a series of strategic steps that are useful in establishing academic–community partnerships and in initiating, maintaining and sustaining CBPR projects. These steps include suggestions regarding community engagement, selection of community advisory board members, outreach, the community’s role in problem identification, selection of research methodologies, considerations related to the community setting, need for flexibility and patience, ‘insider vs. outsider’ conflicts, commitment and training issues, timing concerns for tenure‐track faculty and the process of community empowerment. Community‐based participatory research is both rewarding and time consuming, for both the researcher and members of the community. Given its promise to address health disparities, it is imperative that researchers acquire the skills needed to develop and cultivate durable community‐researcher partnerships. (shrink)

There is currently a gap between assessment and intervention in the literature concerned with climate change and food. While intervention is local and context dependent, current assessments are usually global and abstract. Available assessments are useful for understanding the scale of the effects of climate change and they are ideal for motivating arguments in favor of mitigation and adaptation. However, adaptation projects need assessments that can provide data to support their efforts. This requires the adoption of a more local and (...) context-sensitive approach to assessments. I suggest that Community-Based Participatory Research has the potential to be a tool for such an approach. (shrink)

Community Partnered Participatory Research is grounded in the ethical principle of respect for persons participating in the research enterprise. The critical importance of respect for person...

BackgroundThe use of a Community Advisory Board is one method of ensuring community engagement in community based research. To identify the process used to constitute CABs in Zambia, this paper draws on the perspectives of both research team members and CAB members from research groups who used CABs in Lusaka. Enabling and restricting factors impacting on the functioning of the CAB were identified.MethodsAll studies approved by the University of Zambia Bioethics Research Committee (...) from 2008 – 2012 were reviewed to identify those studies that were likely to include a CAB. Eight teams with studies that included a CAB were identified. For each of these studies, consent was obtained to conduct an informal interview with a research team member and to obtain contact details for one CAB member. In total 14 interviews were conducted with 8 research team members and 6 CAB members from 12–30 August 2013.ResultsIdentification of potential CAB members from the community and their participation in developing the terms of reference for CABs was perceived to have contributed to the success of the CAB. Due to the trust that the community had in members of their community the CABs were then in a stronger position to influence community participation in the research. Training of CAB members was identified as a factor that enhanced the functioning of a CAB. Lack of commitment and low literacy levels of CAB members posed a threat to the role of the CAB. Although compensation in the form of a stipend was not provided, CAB members were provided with transport reimbursements for attending meetings.ConclusionsSelection of CAB members from within the community contributed to community confidence in the CAB, enhancing its ability to act as an effective link between study team and community. This contributed positively to the conduct of the study and enhanced community awareness and acceptance of the research. However, establishment of study specific CABs has the potential to compromise CAB independence due to support provided by the research team in the form of transport reimbursements and other forms of support. Consideration should be given to establishing community wide Community Advisory Boards that could function across a range of studies to increase independent objective decision-making. (shrink)

Background Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. (...) Rules on involving the population affected when conducting research have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas? Main body of the abstract More than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies recommended the constitution of a formal organism, the Community Advisory Board, as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used. Conclusions Allocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring, and training researchers. (shrink)

The title does not refer to the application of knowledge through faculty engagement in community-based research, teaching and service – something that is usually understood as community-engaged scholarship. The change of paradigm referred to in the title should be understood within the broader framework of the general transformation of our participatory or convergence culture in the age of social and “spreadable” media. As the Web 2.0 evolves toward the Web 3.0, or the semantic web, (...) class='Hi'>community-engaged scholarship remains one of the most crucial components of this larger and more pervasive phenomenon and this also refers to the "academic community" at large. What is at stake is not only the transformation of the procedures of scholarly research and learning but also and more importantly the transformation of its goals: traditionally based on the individual researcher and author, knowledge work, or the scholarly mode of production, is increasingly overhauled into a collective, collaborative enterprise, on a much larger scale. Moreover, the general move from discursive to graphic-algorithmic forms of data visualization and interpretation, has eventful consequences for critical thinking: as humanists engaged with a potentially radical transformation of the community we belong to, our most daunting task is how to transpose traditional scholarly practices onto the new platform, envisioning new goals and outputs for our traditional tasks. (shrink)

PONIC P, REID C and FRISBY W.Nursing Inquiry2010;17: 324–335 Cultivating the power of partnerships in feminist participatory action research in women’s healthFeminist participatory action research integrates feminist theories and participatory action research methods, often with the explicit intention of building community–academic partnerships to create new forms of knowledge to inform women's health. Despite the current pro‐partnership agenda in health research and policy settings, a lack of attention has been paid to how to (...) cultivate effective partnerships given limited resources, competing agendas, and inherent power differences. Based on our 10+ years individually and collectively conducting women's health and feminist participatory action research, we suggest that it is imperative to intentionally developpower‐withstrategies in order to avoid replicating the power imbalances that such projects seek to redress. By drawing on examples from three of our recent feminist participatory action projects we reflect on some of the tensions and complexities of attempting to cultivate power‐with research partnerships. We then offer skills and resources needed by academic researchers to effectively harness the collective resources, agendas, and knowledge that each partner brings to the table. We suggest that investing in the process of cultivating power‐with research partnerships ultimately improves our collective ability to understand and address women's health issues. (shrink)

Mobile health research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE platform now features a community forum, a resource library (...) and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter. (shrink)

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an (...) interdisciplinary research team used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (shrink)

Institutional discrimination matters. The purpose of this longitudinal community‐based participatory research study was to examine institutional procedural discrimination, institutional racism, and other institutional discrimination, and their relationships with participants' health during a maternal and child health program in a municipal initiative. Twenty participants from nine multilingual, multicultural community‐based organizations were included. Overall reported incidences of institutional procedural discrimination decreased from April 2019 (18.6%) to November 2019 (11.8%) although changes were not statistically significant and participants (...) reporting incidences remained high (n = 15 in April and n = 14 in November). Participants reported experiencing significantly less “[when] different cultural ways of doing things were shared, the project did not support my way” from April 2019 (23.5%, n = 4) to November 2019 (0%, n = 0), Wilcoxon signed‐rank test Z = −2.00, p < 0.05. Some participants reported experiencing institutional racism (29.4%, n = 5) and other institutional discrimination (5.9%, n = 1). Participants experiencing institutional racism, compared to those who did not, reported a higher impact of the Initiative's program on their quality of life (t = 3.62, p < 0.01). Participatory survey designs enable nurse researchers to identify hidden pathways of institutional procedural discrimination, describe the impacts experienced, and examine types of institutional discrimination in health systems. (shrink)

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other (...) and engage in substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)

BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question (...) framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

There is increased recognition of the importance of well-designed scholarship on how immigration status and policies impact migrants in the United States, including those who are unauthorized. Some researchers have looked to community-based and participatory methods to develop trust, place migrants’ voices at the forefront, and engage collaboratively in using research as a tool for social change. This article reviews three ethical ambiguities that emerged in the process of a series of participatory action research (...) projects with migrants in the United States, many of whom were unauthorized. Specifically, three themes are discussed: the tension between the human desire to respond to injustices, and the challenges of doing so in ways that recognize one’s privilege and power as an outsider and supports the migrants’ agency and autonomy; the complex definition, explanation, and dimensions of “risk”; and the complexity of using a methodology that prioritizes participants’ collective identity and community in the context of regulations that are designed primarily to protect individuals. (shrink)

We describe how a Community-Based Participatory Research (CBPR) process was used to develop a means of discussing end-of-life care needs of Deaf seniors. This process identified a variety of communication issues to be addressed in working with this special population. We overview the unique linguistic and cultural characteristics of this community and their implications for working with Deaf individuals to provide information for making informed decisions about end-of-life care, including completion of health care directives. Our (...) research and our work with members of the Deaf community strongly show that communication and presentation of information should be in American Sign Language, the language of Deaf citizens. (shrink)

This case study focuses on some of the ethical issues that arise in community-based participatory research, drawing on an example from practice in the UK. It comprises a case example written by a community researcher, followed by two commentaries, which analyse the case and offer different perspectives on the issues raised from the commentators' experiences in Aotearoa New Zealand and Australia. The case example highlights the challenges faced by volunteer action researchers undertaking research interviews (...) and mentoring on sensitive topics in their local neighbourhoods. It raises questions about: the emotional effects of discussing matters of mental health, well-being and money management on both researchers and research participants; how much researchers should disclose about their own lives; and the nature of the support needs of volunteer community researchers. (shrink)

Within the Participatory Design community as well as the Computer Supported Cooperative Work tradition, a lot of effort has been put into the question of letting field studies inform design. In this paper, we describe how game-like approaches can be used as a way of exploring a practice from a design point of view. Thinking of ethnographic fieldwork as a base for sketching, rather than descriptions, creates openness that invites collaborative authoring. The concept of playful collaborative exploration suggests (...) certain ways of interacting with material from field studies so that it becomes a design material for an open-ended design process. We have carried out field studies, transformed the field material into design material, and set up a design game for working with it together with the people we followed in the field. The design game builds on an idea about the power of narratives and the benefits of constraining rules. We believe that this framework for collaboration opens for playfulness, experimentation, and new design ideas. (shrink)

Efforts to build research capacity and capability in low and middle income countries (LMIC) has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/aids, even culturally specific codes for recruiting (...) vulnerable populations such as the San or Maori people. However, the same cannot be said for implementing research in global health. In an effort to build on this work, the Pakistan Institute of Living and Learning and University College London in the UK sought to better understand differences in beliefs, values and norms of local communities in Pakistan. In particular, they have sought to help researchers from high income countries (HIC) understand how their values are perceived and understood by the local indigenous researchers in Pakistan. To achieve this end, a group discussion was organised with indigenous researchers at Pakistan Institute of Living and Learning. The discussion will ultimately help inform the development of a cultural protocol for researchers from HIC engaging with communities in LMIC. This discussion revealed five common themes; (1) religious principles and rules, (2) differing concepts of and moral emphasis on autonomy and privacy, (3) importance of respect and trust; (4) cultural differences (etiquette); (5) custom and tradition (gift giving and hospitality). Based on the above themes, we present a preliminary cultural analysis to raise awareness and to prepare researchers from HIC conducting cross cultural research in Pakistan. This is likely to be particularly relevant in collectivistic cultures where social interconnectedness, family and community is valued above individual autonomy and the self is not considered central to moral thinking. In certain cultures, HIC ideas of individual autonomy, the notion of informed consent may be regarded as a collective family decision. In addition, there may still be acceptance of traditional professional roles such as ‘doctor knows best’, while respect and privacy may have very different meanings. (shrink)

There is a strong need to connect agricultural research to social movements and community-based food system reform efforts. Participatory research methods are a powerful tool, increasingly used to give voice to communities overlooked by academia or marginalized in the broader food system. Plant breeding, as a field of research and practice, is uniquely well-suited to participatory project designs, since the basic process of observing and selecting plants for desirable traits is accessible to participants (...) without formal plant breeding training. The challenge for plant breeders engaged in participatory research is to consider not only how their work incorporates farmer input in developing new varieties, but also how it interacts with broader questions of food sovereignty, food justice, diversity and democratization in the food system. This article examines these issues in the context of the Seed to Kitchen Collaborative, a participatory variety evaluation and breeding project at the University of Wisconsin-Madison. (shrink)

BAIARDI JM, BRUSH BL and LAPIDES S. Nursing Inquiry 2010; 17: 289–296 Common issues, different approaches: strategies for community–academic partnership developmentCommunities around the United States face many challenging health problems whose complexity makes them increasingly unresponsive to traditional single‐solution approaches. Multiple approaches have considered ways to understand these health issues and devise interventions that work. One such approach is community‐based participatory research. This article describes the development of a new collaborative partnership between a school of (...) nursing and an urban social service agency using community‐based participatory research as a framework. We describe the partnership’s evolution and process of data collection and analysis and evaluate the outcomes of both. We argue that community‐based participatory research involves partnerships at its core whose members, both as individuals and part of the collaboration, must be committed and nimble in the face of shifting and challenging health and social problems, recognize common issues and concerns across the boundaries of community and academia, and respect each other’s different approaches and expertise. (shrink)

The developments along the Mekong River, including in Cambodia, have boomed. There were 755 dams. Of these, 537 have been completed, and 152 have been planned or proposed. Of these, 52 were under construction, and 14 have been canceled or suspended. Of these dams, 392 were hydropower, 337 were irrigation, and 26 were other types (CGIAR, 2015). Even though some officials saw economic development as a result of the hydropower dam, the negative impacts of hydropower dams were seen by many (...) local experts and NGOs. The negative impacts include reduced fishing stocks and exacerbated socio-economic issues (Asia and the Pacific Policy Society, 2022). Experts have conducted some research on ecosystems and livelihoods, but there has been a lack of studies conducted by local communities to investigate their cross-border impacts as a result of the hydropower dam, despite the fact that local communities have been facing issues as a result of the Mekong Development. The community research protocol was developed to improve local communities' understanding of their local contexts and their confidence in negotiating with decision-makers and policymakers to address and respond to their needs and the findings of studies on local planning for sustainable community development. The paper aims to guide community leaders and staff in conducting community research on transboundary impacts on fisheries resources, ecosystems, and the livelihoods of local communities using their knowledge. (shrink)

STORY L, MAYFIELD‐JOHNSON S, DOWNEY LH, ANDERSON‐LEWIS C, YOUNG R and DAY P. Nursing Inquiry 2010; 17: 373–384 Getting on Target with Community Health Advisors (GOTCHA): an innovative stroke prevention projectHealth disparities along with insufficient numbers of healthcare providers and resources have created a need for effective and efficient grassroots approaches to improve community health. Community‐based participatory research (CBPR), more specifically the utilization of community health advisors (CHAs), is one such strategy. The Getting (...) on Target with Community Health Advisors (GOTCHA) project convened an interdisciplinary team to answer the call from 10 counties in the rural Mississippi Delta area of ‘The Stroke Belt’ to meet the region’s identified health needs, and to impact the health of a disparaged state. This article explores this CBPR project including the community involvement strategies, innovative CHA training curriculum, evaluation plan, and implications to healthcare professionals, particularly nurses. (shrink)

Black youths experience poor mental health especially due to anti‐Black racism. Research related to Black youths have been conducted on Black youths with little or no participation or engagement rather than with Black youths. This paper presents information from a dialogue on decolonizing nursing research. I draw on interviews and conversation cafes with around 120 Black youths in Canada to identify strategies for decolonizing research with Black youths. First, I reflect on my relations with the Indigenous land (...) in which the study was conducted as well as my positionality as a Black woman. In this paper, I discuss how community based participatory action research can integrate capacity building component, amplify youth's voices and capitalize on the agency of youths as fruitful actors. I also reflect on the opportunities and benefits of decolonizing nursing research. (shrink)

There is a strong need to connect agricultural research to social movements and community-based food system reform efforts. Participatory research methods are a powerful tool, increasingly used to give voice to communities overlooked by academia or marginalized in the broader food system. Plant breeding, as a field of research and practice, is uniquely well-suited to participatory project designs, since the basic process of observing and selecting plants for desirable traits is accessible to participants (...) without formal plant breeding training. The challenge for plant breeders engaged in participatory research is to consider not only how their work incorporates farmer input in developing new varieties, but also how it interacts with broader questions of food sovereignty, food justice, diversity and democratization in the food system. This article examines these issues in the context of the Seed to Kitchen Collaborative, a participatory variety evaluation and breeding project at the University of Wisconsin-Madison. (shrink)