Since James Carroll (1971) made a strong case for “participatory technology”, scientists, engineers, policy-makers and the public at large have seen quite a number of different approaches to design and implement participatory processes in technology assessment and technology policy. As these participatory experiments and practices spread over the last two decades, one could easily get the impression that participation turned from a theoretical normative claim to a working practice that goes without saying. Looking beyond the well-known forerunners (...) and considering the ambivalent experiences that have been made under different conditions in various places, however, the “if” and “how” of participation are still contested issues when questions of technology are on the agenda. Legitimation problems indicate that attempts to justify participation in a given case have not been entirely successful in the eyes of relevant groups among the sponsors, participants, organizers or observers. Legitimation problems of participatory processes in technology assessment and technology policy vary considerably, and they do so not only with the two domains and the ways of their interrelation or the specific features of the participatory processes. If we ask whether or not participation is seen as problematic in technology assessment and technology policy-making and in what sense it is being evaluated as problematic, then we find that the answer depends also on the approaches and criteria that have been used to legitimize or delegitimize the call for a specific design of participation. (shrink)

The Norwegian National Committee for Research Ethics inScience and Technology (NENT), collaborating with The NorwegianFisherman''s Association and The Research Council of Norway,started in 1999 a project aiming at an ethical assessment of Norwegian fisheries for the year 2020. The project was to preparethe ground for ethical debate in and of the fishery sector inview of pending important decisions on long term strategies. Thispaper has its focus on the method used for achieving these aims,rather than the substantive results concerning the fisheries. (...) Amethod was developed for this purpose, called the ethicalscenario process. This included the construction of scenarios forthe future of Norwegian fisheries, using an ethical matrix for evaluating strategies, and organizing a ``value workshop'''' whereparticipants from different stakeholder groups came together todo ethical evaluations. The positive achievements and theshortcomings of this method are discussed in this paper. The useof an ethical matrix was meant to combine a participatory approachwith insights from theoretical ethics. The project revealedinherent tensions between these two objectives. Possible ways ofdealing with this tension are indicated, but in general a goodgrasp of the socio-political context might be the best guardianagainst the possible pitfalls involved in such an approach. (shrink)

Food systems are made of a myriad of actors, visions and interests. Collaborative governance arrangement may foster their transformation towards greater sustainability when conventional means, such as state-oriented planning, technological developments or social innovations provide insufficient impetus. However, such arrangements may achieve transformative results only under certain conditions and in specific contexts. Despite an abundant literature on participatory schemes, the success for collaborative governance arrangements remains partially understood and deserves academic attention, in particular in the field of food systems (...) reform. This article provides an in-depth analysis of an empirical case study in the Walloon Region (Belgium), where the administration for sustainable development initiated a six-month participatory process to collectively construct a roadmap towards a sustainable regional food system. The article explores the extent to which the process has allowed transformative voices to emerge, and assesses whether the outcome provides a promising tool for adopting a transformative policy at the regional scale. It argues that the facilitation process insufficiently attenuated existing power relations and highlights key underlying factors (including time, resources, expertise and coalition building) that, like in classical negotiation settings, strengthen or weaken specific actors. It discusses the link between the results of the participatory process and the potential for policy-makers to build upon these to guide further the region’s food system towards a sustainable future. (shrink)

In 2004, drug user representatives lobbied against the now stalled $17.5m Australian government Retractable Needle and Syringe Technology Initiative due to concerns about inadequate consultation and potential health risks to participants.1 Some drug user organisations have also recently withdrawn support for the Australian Illicit Drug Reporting System , ….

Healthcare ethics consultants in the Veterans Health Administration (VHA) document consults in an enterprise-wide web-based database entitled IEWeb, serving as a system of record for healthcare ethics documentation at 1300 VA facilities. The need arose to evolve the database from an ethics process training resource into a more streamlined documentation repository that captures essential consult elements. A VHA National Center for Ethics in Health Care (NCEHC) Improvement Team convened for three tasks: (1) Specify and prioritize IEWeb changes (occurred via (...) six focus groups composed of “new user” and “super user” cohorts with analysis of existing documentation patterns); (2) Pilot the changes regionally (via regional communication, training, and reviews of pre-post use patterns); and (3) Measure the impact of national change implementation on user perspectives (via pre-and post-change implementation polls). Focus groups identified six implementable priority areas for ethics consult documentation improvement, including the development of a usable consult summary note for ready conversion from IEWeb fields into the electronic health record. Post-IEWeb updates showed an increased number of consults documented, a reduction in “time to consult documentation closure” by a mean of 4.5 days, and a clinically-meaningful improvement in the quality of documentation (78% of ethics questions scored “above-bar” on the validation tool pre- vs. 89% scored “above-bar” post-IEWeb changes, n = 140). According to national survey findings, the number of consultants documenting “all” consults in IEWeb increased, satisfaction increased, and perception of documentation difficulty decreased. IEWeb simplification enabled ethics consultants to re-focus their documentation completion efforts by decreasing perception of documentation burden while improving documentation frequency and quality in a clinically-meaningful way. (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)

As yet, there is no enactive account of social cognition. This paper extends the enactive concept of sense-making into the social domain. It takes as its departure point the process of interaction between individuals in a social encounter. It is a well-established finding that individuals can and generally do coordinate their movements and utterances in such situations. We argue that the interaction process can take on a form of autonomy. This allows us to reframe the problem of social (...) cognition as that of how meaning is generated and transformed in the interplay between the unfolding interaction process and the individuals engaged in it. The notion of sense-making in this realm becomes participatory sense-making. The onus of social understanding thus moves away from strictly the individual only. (shrink)

The use of participatory methods has become increasingly popular in agricultural research and development and natural resource management. A range of approaches are being used at the grassroots level in order to involve local citizens and groups in projects. Many of these activities remain peripheral and isolated from conventional development agencies and policies. However, recent efforts are evolving to link participatory approaches into wider planning and policy-making processes and to increase the influence of such methods in resource management (...) initiatives. Main lessons from these innovative participatory experiences in addressing policy issues for sustainable development are summarized. (shrink)

A possible explanation for policy implementation failure is that the views of the policy’s target groups are insufficiently taken into account during policy development. It has been argued that involving these groups in an interactive process of policy development could improve this. We analysed a project in which several target populations participated in workshops aimed to optimise the utilisation of an expensive novel drug (interferon beta) for patients with Multiple Sclerosis. All participants seemed to agree on the appropriateness of (...) establishing a central registry of Multiple Sclerosis patients and developing guidelines. Nevertheless, these policy measures were not implemented. Possible explanations include (1) the subject no longer had high priority when the costs appeared lower than expected, (2) the organisers had paid insufficient attention to the perceived problems of parties involved, and (3) changes within the socio-political context. The workshops in which representatives of the policy’s target populations participated did not provide enough interactivity to prevent policy implementation failure. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so (...) that outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice (...) throughout the study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA.ResultsWe distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection.ConclusionsParticipatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments. (shrink)

Research question/aim/objectives Providing care for hospitalized children causes moral distress to nurses. Employee participation in discovering and solving the everyday problems of the workplace is one of the ways to hear the voices of nurses. This study aimed to evaluate the effect of participatory management programs on perceived organizational support and moral distress in pediatric nurses. Research design A quasi-experimental study. Participants and research context The present study was conducted on 114 pediatric nurses in Iran. Data were collected using (...) the Perceived Organizational Support Scale and the Moral Distress Scale of nurses. The intervention included implementing a participatory management program in three treatment departments that were randomly selected and it lasted 4 months. Participatory management was at the level of problem-solving with a focus on investigating, solving, and correcting issues and problems of work shifts and departments concerning the physical environment, equipment of the department, improvement of work processes, and team cooperation. In the control group, ordinary organizational approaches to problem-solving were used. Ethical considerations This study was approved by the Ethics Committee of Mashhad School of Nursing and Midwifery. Informed consent was obtained from the study participants. Findings/results Based on the results, both groups were homogenous before the intervention in terms of moral distress and perceived organizational support. The results showed that the moral distress mean scores in the intervention group decreased from 1.45 (0.52) to 1.03 (0.37) after the intervention. Also, the score of the perceived organizational support was 2.12 (1.2) increased after the intervention to 2.68 (1.10) in the intervention group. Conclusions It was found that the participation of nurses in the problem-solving process to solve daily workplace issues can be effective in increasing their perceived organizational support and reducing their moral distress. (shrink)

Participatory modeling in sustainability science allows scientists to take stakeholders’ interests, knowledge and values into account when designing a model-based solution to a sustainability problem, by incorporating stakeholders in the model-building process. This improves the chance of generating socially robust knowledge and consensus on solutions. Part of what helps in this regard is that scientists, through involving stakeholders, limit their own values from influencing the outcome, thus achieving some level of value-neutrality. We argue that while it might achieve (...) this to some extent, it comes at a cost to the reliability of the outcomes, which is ethically problematic. (shrink)

YOUNG L, and WHARF HIGGINS J.Nursing Inquiry2010;17: 346–358 Using participatory research to challenge the status quo for women’s cardiovascular healthCardiovascular health research has been dominated by medical and patriarchal paradigms, minimizing a broader perspective of causes of disease. Socioeconomic status as a risk for cardiovascular disease is well established by research, yet these findings have had little influence. Participatory research (PR) that frames mixed method research has potential to bring contextualized clinically relevant findings into program planning and policy‐making (...) arenas toward developing meaningful health and social policies relevant to primary prevention. In this article we provide an overview of a PR program that included two quantitative and one qualitative studies and then we discuss lessons learned. The PR process we found was empowering for lone mothers, and transformative for lone mothers and researchers. Further, PR as an approach to research opened spaces in practice and policy‐making arenas to raise upstream issues relevant to the health of low income lone mothers. We conclude that while PR is an effective approach to social determinants research, as a time‐intensive endeavor, and one that does not easily align with research tradition, researchers must consider the strengths and drawbacks of PR when planning to implement such an approach. (shrink)

Current theories of social cognition are mainly based on a representationalist view. Moreover, they focus on a rather sophisticated and limited aspect of understanding others, i.e. on how we predict and explain others’ behaviours through representing their mental states. Research into the ‘social brain’ has also favoured a third-person paradigm of social cognition as a passive observation of others’ behaviour, attributing it to an inferential, simulative or projective process in the individual brain. In this paper, we present a concept (...) of social understanding as an ongoing, dynamical process of participatory sense-making and mutual incorporation. This process may be described (1) from a dynamical agentive systems point of view as an interaction and coordination of two embodied agents; (2) from a phenomenological approach as a mutual incorporation, i.e. a process in which the lived bodies of both participants extend and form a common intercorporality. Intersubjectivity, it is argued, is not a solitary task of deciphering or simulating the movements of others but means entering a process of embodied interaction and generating common meaning through it. This approach will be further illustrated by an analysis of primary dyadic interaction in early childhood. (shrink)

This article draws insights from a case study examining unanswered health questions of residents in two polluted towns in an industrial region in southern France. A participatory health study, as conducted by the author, is presented as a way to address undone science by providing the residents with relevant data supporting their illness claims. Local residents were included in the health survey process, from the formulation of the questions to the final data analysis. Through this strongly participatory (...) science process, the townspeople offered many creative ideas in the final report for how the data could be used to assist in improving their health and environment and policy work is already in evidence, resulting from the study. Drawing from the literature on participatory science and expertise as well as from the initial outcomes of the local health study, I propose that SPS produces a form of knowledge justice. Understanding knowledge and its making as part of a social justice agenda aligns well with environmental justice frames. Through SPS, local residents have a hermeneutical resource to make sense of their embodied lives and augment their claims with strong data supporting actions for improving their health and environment. (shrink)

Open peer commentary on the article “Loving the Earth by Loving a Place: A Situated Approach to the Love of Nature” by Laura Candiotto. Abstract: Candiotto appeals to the panpsychist notion of “becoming native” and the enactivist notion of “loving sense-making” to develop a situated approach to the love of nature. Although I am fully on board with Candiotto’s claim that love of nature is of paramount importance and that community-based local interventions to preserve the Earth are urgently needed, I (...) worry that an account that conceptualizes love of nature in terms of participatory sense-making is on shaky ground. The supposition that the Earth, localized in particular places, is a partner in a participatory process of creating meaning will strike many readers as implausible, and thus may prove to be inadequate in motivating interventions to preserve the Earth. (shrink)

While researchers have identified numerous problems with food systems, sustainable, just, and workable solutions remain scarce. Recent developments in the food justice literature, however, show which local food movements favor sustainability and justice as problem-solving measures. Yet, some of the ways that these approaches could work in concert are overlooked. Through focusing on how they are compatible, we can understand how such endeavors can improve the conditions for community control and reduce the detrimental effects of agribusiness. In this paper, the (...) author proposes a participatory budgeting project that involves a relatively new process called “vertical agriculture” to alleviate some of the harm that current agricultural practices cause. In turn, we see how such a measure can improve the integrity of municipal governance and reshape the power structures that control food systems. (shrink)

This book articulates a participatory conception of deliberative democracy that takes the democratic ideal of self-government seriously. It aims to improve citizens' democratic control and vindicate the value of citizens' participation against conceptions that threaten to undermine it. The book critically analyzes deep pluralist, epistocratic, and lottocratic conceptions of democracy. Their defenders propose various institutional ''shortcuts'' to help solve problems of democratic governance such as overcoming disagreements, citizens' political ignorance, or poor-quality deliberation. However, all these shortcut proposals require citizens (...) to blindly defer to actors over whose decisions they cannot exercise control. Implementing such proposals would therefore undermine democracy. Moreover, it seems naive to assume that a community can reach better outcomes 'faster' if it bypasses the beliefs and attitudes of its citizens. Unfortunately, there are no 'shortcuts' to make a community better than its members. The only road to better outcomes is the long, participatory road that is taken when citizens forge a collective will by changing one another's hearts and minds. However difficult the process of justifying political decisions to one another may be, skipping it cannot get us any closer to the democratic ideal. Starting from this conviction, the book defends a conception of democracy ''without shortcuts''. This conception sheds new light on long-standing debates about the proper scope of public reason, the role of religion in politics, and the democratic legitimacy of judicial review. It also proposes new ways to unleash the democratic potential of institutional innovations such as deliberative minipublics. (shrink)

For valid informed consent, it is crucial that patients or research participants fully understand all that their consent entails. Testing and revising informed consent documents with the assistance of their addressees can improve their understandability. In this study we aimed at further developing a method for testing and improving informed consent documents with regard to readability and test-readers’ understanding and reactions. We tested, revised, and retested template informed consent documents for biobank research by means of 11 focus group interviews with (...) members from the documents’ target population. For the analysis of focus group excerpts we used qualitative content analysis. Revisions were made based on focus group feedback in an iterative process. Focus group participants gave substantial feedback on the original and on the revised version of the tested documents. Revisions included adding and clarifying explanations, including an info-box summarizing the main points of the text and an illustrative graphic. Our results indicate positive effects on the tested and revised informed consent documents in regard to general readability and test-readers’ understanding and reactions. Participatory methods for improving informed consent should be more often applied and further evaluated for both, medical interventions and clinical research. Particular conceptual and methodological challenges need to be addressed in the future. (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)

MACDONNELL JA. Nursing Inquiry 2011; 18: 313–324 Gender, sexuality and the participatory dimensions of a comparative life history policy studyIn this paper, I explore how a critical feminist lens was a crucial element in creating a participatory policy study which used a qualitative design and comparative life history methodology. This study focused on Canadian nurses’ political practice related to advocacy for lesbian health. Findings show that the combination of the gender lens and life history approach offers potential to (...) create knowledge in ways aligned with health‐promoting and emancipatory outcomes. However, the nature of participation and interaction by researcher and participants is contexualized and contested given complex dynamics of power that shape all aspects of this doctoral study process. The critical feminist lens with its focus on reflexivity informed the content and process of knowledge production in this study and shaped key turning points: the ways in which this policy study was conceptualized, the choice of comparative life history methodology, ethical considerations, data collection and analysis and representation of findings. Life history is unlikely to be the methodology that first comes to mind when undertaking a policy study. Its historical roots are associated with biographical, oral history and narrative approaches, which typically aim to elicit understanding of lived experience. Yet, it was this very aspect, this focus on lived experience, which rendered life history methodology fitting as I contemplated how to examine the relationship between nurses and policy. I was interested in understanding nurses’ political practice, how policy influenced nurses’ capacity to advocate in their everyday lives, as well as nurses’ impacts on policy processes and their larger social worlds. (shrink)

Participatory budgeting (PB) is a paradigm that empowers residents to directly decide how a portion of the public budget is spent. Specifically, residents deliberate over spending priorities and vote over how the budget should be allocated to different public projects. As such it is a mechanism of top-down transfer of decisions on the part of budgetary expenditure to citizens. In recent years, PB has become a central topic of discussion and an important field of innovation for those involved in (...) local development, considered one of the most successful democratic innovations of the last 25 years. Participatory budgeting contributes significantly to participatory democracy, inclusiveness processes and placemaking, but some factors limit the scale of these aspects. However, a relatively simple idea – that “ordinary citizens” should have a direct say in public budgets that impact them – has travelled the world by the most unexpected routes and landed in unlikely sites. There is no precise model for PB programmes. While there are similar tenets and institutional mechanisms, PB programmes are structured in response to each city or state’s particular political, social and economic environment. Therefore, it is necessary to consider to what extent PB strengthens the discussed processes, whether it allows reaching new, inactive groups of citizens and includes them in the decision-making process regarding shaping public spaces. The popularity of this tool carries the risk that it will be used to build the image of local government instead of significantly increasing the participation of citizens in deciding on local public spaces. The chapter aims to present and analyse participatory budgeting practices in four European and North American countries (Switzerland, Poland, North Macedonia and the United States of America) to show the role of PB in placemaking processes by the levels and forms of participation, the analysis of representativeness of PB participants (inclusiveness), placemaking impact and its level of digitisation. The proposed comparative analysis allows for assessing the importance of the tool for increasing social participation, which is participatory budgeting, for understanding its limitations and suggesting directions for its improvement to shape more inclusive, friendly and open public spaces. (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)

Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines (...) for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study. (shrink)

This paper challenges the exclusion of patients from epistemic practices in psychiatry by examining the creation and revision processes of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a document produced by the American Psychiatric Association that identifies the properties of mental disorders and thereby guides research, diagnosis, treatment, and various administrative tasks. It argues there are epistemic—rather than exclusively social/political—reasons for including patients in the DSM revision process. Individuals with mental disorders are indispensable resources to enhance psychiatric (...) epistemology, especially in the context of the crisis, controversy, and uncertainty surrounding mental health research and treatment. (shrink)

The human-centred debate in Britain focuses on the idea of human-machine symbiosis, and the “Dialogue” debate in Scandinavia focuses on the deep understanding of human communication, through a process of inner reflection. Both of these debates provide a framework for the participatory design of AI systems.The emergence of “social Europe” creates the desirability for a sharing of social and cultural knowledge and resources among the citizens of Europe. This raises the possibility of exploiting the potential of new technology (...) for the distribution and transfer of knowledge and skill among the citizens of Europe whilst retaining the diversity of their cultures and languages. These issues of transfer have been the focus of many AI researchers who have been concerned with the design of AI systems for the education, training and welfare of disadvantaged citizens. It is suggested that central to such a transfer is the design of participatory learning systems which focus on the mediation and distribution of knowledge in diverse socio-cultural contexts.In this paper, the SEAKE Centre's projects, especially “Brighton Parosi”, and “Adult Literacy” are discussed to provide an insight into the concepts and practice of designing such participatory systems. The philosophy of these projects was rooted in the sharing of social and cultural experiences, through participatory learning. The development of the projects involved a process of exchange of language and culture in both formal and informal learning environments. For the Parosi Project social interaction was the central core for the exchange of cultural experiences and the language acquisition process. The Adult Literacy project built on the exchange process, and used the idea of the mediation of knowledge for the design of a knowledge based system. The design process developed by the above two projects could be described as a participatory design approach which builds upon and extends the human-machine symbiosis and dialogue approaches. (shrink)

ABSTRACT: Ethics can be envisioned as a process where human beings move from a more passive stance in their moral lives to a more active one, in which the moral aspects of their lives become the basis of a project to best live one's life. Participatory research and methods would appear essential to ethics in this light, yet they remain rather marginally used in bioethics. In this article, I argue that participatory research methods are particularly compelling means (...) of ethical enactments because of their ability—when carried out properly—to help promote self-actualization. Although I cannot review in detail the vast array of participatory research undertaken in management, education, communication, and so on, I pinpoint the advantages of this orientation to research, especially in light of a pragmatist and deliberative form of ethics that aims to help understand and enact human flourishing. These advantages include: (1) the co-understanding and co-reconstruction of problem situations and responses; (2) the importance attributed to meaning and intersubjectivity; (3) mutual learning (moral co-learning); (4) empowerment for effective eudemonistic change; and (5) opening the evaluation of outcomes to human flourishing. I also explain that these attributes of participatory research and methods do not preclude the use of non-participatory methods and approaches in ethics. (shrink)

Third-party certification, the most common organic certification system, has faced growing criticism in recent years. This has led to the development of alternative certification systems, most of which can be classed as Participatory Guarantee Systems. PGS have been promoted as a more suitable, cheaper and less bureaucratic alternative to TPC for local markets and are associated with additional benefits such as empowering smallholder farmers, facilitating farmer-to-farmer learning and enhancing food security and sovereignty. PGS have spread rapidly in the past (...) few years, but studies suggest that they are facing numerous challenges that, if not addressed, may jeopardise these benefits. Using the example of three Mexican PGS initiatives, this paper explores the main challenges faced by PGS, specifically those predominantly found in producer-run PGS initiatives. Based on producer and consumer surveys, semi-structured and informal interviews, and participant and non-participant observation, the key challenges that emerged were continuous implementation of the certification process, time constraints, personal conflicts and conflict avoidance. The paper further argues that the requirements for PGS recognition under the Mexican Law for Organic Products may also threaten the continued existence of PGS and suggests that mechanisms for managing conflicts, incentivising PGS participation and mitigating opportunity costs are key if PGS are to continue to develop. (shrink)

BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis, a biopsychosocial approach to care is crucial.AimsThis paper aims to present an example of a co-creation process in the context of chronic diseases preferences and perspectives of young adults with multiple sclerosis and healthcare professionals on the relevance, objectives, and modalities of a biopsychosocial intervention and on strategies/barriers to participation.MethodsA participatory mixed-method approach (...) in three consecutive steps was implemented: online surveys with YawMS and HCPs, online focus groups with YawMS, consultation with an advisory board composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction. Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability. (shrink)

This chapter, which critically assesses the potential of participatory and reflexive governance in realizing sustainability goals, discusses the condition along with favorable reflexive and participatory mechanisms needed to realize local knowledge, collective learning, and environmental goals. It presents the findings of a meta-analysis of many studies on the collective environmental decision-making processes, focusing on examples of public participation initiated to agree on relevant public decisions. The samples required for the meta-analysis are taken from a database of 200 case (...) studies of collaborative environmental management in Western countries. The sample cases are selected according to the comprehensiveness of available information derived from North America, demonstrating the significance of participatory governance in the United States and Canada. (shrink)

Since the 1990s participation has become a buzzword in education as well as in development contexts. In those contexts, participation has more particularly been linked up with personal promises of self‐fulfilment, ownership and self‐determination as well as with democratic ideals such as justice, equivalence and freedom. In the paper, we focus on a dominant argument in the justification and also realisation of participation in those empirical contexts, namely the claim to freedom. In order to analyse this freedom, we explore a (...) concrete case in which we show how participatory processes promote various possibilities for the subject to enact freedom. Via Foucault's perspective of governmentality we scrutinise this argument of freedom, indicating how the possibilities and opportunities for liberation and freedom are actually governing the subject in a very particular way, constituting a specific ‘participatory’ norm. (shrink)

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)

Climate change exposes ecological and socio-economic systems to risks. The identified disparities in knowledge about the social climate system are at the root of the difficulties in perceiving and understanding the diversity of risks related to climate change. The still huge gap between what science and technological innovation can contribute to mitigation and what is unmanageable by humans inevitably requires a continuous process of adaptation. This work is part of the research associated with the European project (under the ERA4CS) (...) 'Citizen Sensing - Urban climate resilience through participatory risk management systems', which proposes to develop a Participatory Climate Risk Management System, a two-way communication system where is part of a participatory risk management system, contributing to adaptive governance. These objectives will be achieved through the creation of a platform that will incorporate information gathered from four pilot studies: Norrköping (Sweden), Porto (Portugal), Rotterdam (The Netherlands) and Trondheim (Norway). Ultimately, the aim is to draw conclusions on how this application can contribute to improving citizens' literacy to cope with climate change adaptation and to raise awareness of this problem, as the involvement of citizens and stakeholders will only be improved if the perception of the risk of climate change is substantially increased. Awareness campaigns about the potential risks associated with extreme events are of great importance. Citizens tend to view climate change as a global phenomenon, ignoring and avoiding taking action until it is directly and seriously affected. (shrink)

Participatory methods aim to address controversy over new technologies through public consultation. This paper first describes the emergence of participatory methods within the framework of technology assessment, then provides an overview of the landscape of participatory arrangements; and, finally, discusses participatory methods in relation to different democratic ideals. The article challenges the widespread assumption that participatory methods can function as normatively neutral tools, which can readily be employed in various social and political settings. Through a (...) case study of consensus conferences on GMOs in three European countries, the article investigates the interpretive processes that take place when participatory procedures are applied in new national political settings. (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)

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.

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)

Participatory approaches to environmental decision making and assessment continue to grow in academic and policy circles. Improving how we understand the structure of deliberative activities is especially important for addressing problems in natural resources, climate change, and food systems that have wicked dimensions, such as deep value disagreements, high degrees of uncertainty, catastrophic risks, and high costs associated with errors. Yet getting the structure right is not the only important task at hand. Indeed, participatory activities can break down (...) and fail to achieve their specific goals when some of the deliberators lack what we will call participatory virtues. We will argue for the importance of future research on how environmental education can incorporate participatory virtues to equip future citizens with the virtues they will need to deliberate about wicked, environmental problems. What is the role of education for deliberative skills and virtues relative to other aspects of environmental education, such as facts and values education? How important is it relative to careful design of the deliberative process? What virtues really matter? (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)

As integrators of talents, Catholic family business leaders are strategically positioned to leverage the unique differences of their workforce. Business literature currently emphasizes participatory leadership as best practice. Participatory leadership is insufficient, however, because increasing the number of voices in the decision-making process may lead to higher levels of conflict or disengagement if the voices are disregarded. This paper proposes that the Catholic Social Teaching concepts of subsidiarity and solidarity provide the guiding principles to integrate participation because (...) together they can account for all stakeholders while advancing business goals. To operationalize these principles, this paper suggests that the dispute resolution field has developed analytical frameworks to assess and reimagine current policies, procedures, and culture for dispute resolution and shared decision making. Ultimately, businesses are the training ground to prepare citizens to participate in the public square and contribute to the common good. (shrink)

This article draws attention to struggles inherent in discourse about the meaning of participation in a Flemish participatory technology assessment (pTA) on nanotechnologies. It explores how, at the project’s outset, key actors (e.g., nanotechnologists and pTA researchers) frame elements of the process like ‘the public’ and draw on interpretive repertoires to fit their perspective. The examples call into question normative commitments to cooperation, consensus building, and common action that conventionally guide pTA approaches. It is argued that pTA itself (...) must reflect an awareness of competing interests and perspectives inherent in the discourse associated with the meaning of ‘participation’ if it is to incite action beyond vested interests and ensure genuine mutual learning. (shrink)

The issue on the role of users in knowledge-based systems can be investigated from two aspects: the design aspect and the functionality aspect. Participatory design is an important approach for the first aspect while system adaptability supported by user modelling is crucial to the second aspect. In the article, we discuss the second aspect. We view a knowledge-based computer system as the partner of users' problem-solving process, and we argue that the system functionality can be enhanced by adapting (...) the behaviour of the system to fit the needs of users with different profiles. We emphasise that the notion of user modelling is crucial to realise such kind of flexibility. User modelling will be beneficial to the user, not only through adaptive interfaces, but also through the enhanced system adaptability. In a knowledge-based system, by incorporating user models, searching can be reduced to a smaller portion in the knowledge-base, thus enhancing system functionality. In other words, user modelling is incorporated to realise flexible inference control to achieve system adaptability. An example is provided, and a general conceptual model is sketched. We conclude this paper by emphasising that the design aspect and functionality aspect are complementary. Achieving enhanced functionality through joint efforts of computers and human users indicates a kind of participatory execution of computerised problem-solving or participatory problem-solving. (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)

A new multi-disciplinary degree program in education and information studies was developed to uniquely facilitate educators’ capacity to be responsive to the demands of a digitally connected world. Charles Sturt University’s Master of Education (Knowledge Networks and Digital Innovation) aims to develop agile leaders in new cultures of digital formal and informal learning. The co-construction of knowledge through interpersonal discourse creates a pedagogical tension between a focus on knowledge-based instruction and outcomes, and on praxis-based instruction. This digital context draws attention (...) to academic integrity issues in online learning environments. Through the new subject Game-Based Learning, students engaged in theory, practice, trends in game designs and immersive aspects of game, utilizing the technology and pedagogical affordances of a range of online tools. The subject builds on the keystone subject and incorporates reflective participation and a culture of participatory learning through integration of social media, social scholarship and open sharing of ideas, resources and experiences online within the broader education community. Subject engagement and assessment design incorporated academic integrity strategies, and needed individual and group collaboration to be fully integrated into the learning experience of the students, thus modeling practices relevant to the student’s own processional practices. This paper also considers the contribution of global connectedness to the success of the pedagogic processes used for embedding academic integrity through social scholarship into the curriculum and learning experiences. (shrink)

Examining the concept of clientelism in analysis of participatory processes, we investigate how collective and individual action are articulated in practices in the case of participatory budgeting in Recife, Brazil. We use ethnographic work to look how collective actors mobilize within the PB process in Recife and show that PB’s territorial and redistributive nature provides fertile ground for informal exchanges to be entrenched in institutional processes at the micro level. Microsocial interactions between political entrepreneurs, intermediaries, and ordinary (...) participants in Recife participatory practice are shaped by two processes: individualization of political loyalties and territorialization of politics. These, we argue, allow informal exchanges to coexist with institutionalized forms of collective action. PB presupposes that participants engage in local struggles and introduces competition and inequalities among them, as access to resources is conditioned by their ability to mobilize and enter into informal interactions that underlie political exchanges within PB. (shrink)

Community psychologists address social inequalities and problems by employing ecological principles, multiple methodologies, and participatory approaches to empower individuals, organizations, and communities to organize action and systems change. This article aims to contribute to mixed methods literature by presenting three models of mixed methods participatory research across a variety of geographic and sociocultural contexts. The models outline participatory processes and points of qualitative and quantitative data integration. Challenges related to the interplay between participatory approaches and mixed (...) methods studies as well as implications on social science research are discussed. (shrink)

This article comprises a short case exemplifying ethical challenges arising for a participatory researcher working with Afghan women refugees during the Covid-19 pandemic in Germany. The researcher is an Iranian-German woman, qualified as a midwife, undertaking doctoral research on refugees’ access to reproductive health care. Disclosures about some women’s experience of domestic violence are made, which raise ethical issues for the researcher relating to personal-professional boundaries, roles and responsibilities. Two commentaries are given on this case from participatory researchers (...) based in Germany, UK and Austria. Both commentaries highlight the relevance of the ethics of care for participatory research and for this research in particular, which entails very close relationships between the doctoral researcher and the refugee women with whom she is researching. The first commentary analyses the research process in terms of Tronto’s five phases of care, while the second illustrates the importance of caring institutions in supporting researchers working on sensitive topics. (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)