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)

Purpose– The purpose of this paper is to provide a response to Christiansen's paper, Ellen Christiansen “From ‘ethics of the eye’ to ‘ethics of the hand’ by collaborative prototyping”,Journal of Information, Communication and Ethics in Society, Vol. 12 No. 1.Design/methodology/approach– Reflection and critique of Christiansen's position.Findings– The paper raises questions about the conceptual basis, the realisation of participation and the conditions required for participative practice to be more broadly employed.Originality/value– It is an original response.

Given the recent call to strengthen collaboration between researchers and relevant practitioners, we consider participatory design as a way to advance Cognitive Science. Building on examples from the Learning Sciences and Human−Computer Interaction, we (a) explore what, why, who, when, and where researchers can collaborate with community members in Cognitive Science research; (b) examine the ways in which participatory‐design research can benefit the field; and (c) share ideas to incorporate participatory design into existing basic (...) and applied research programs. Through this article, we hope to spark deeper discussions on how cognitive scientists can collaborate with community members to benefit both research and practice. (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)

In this essay several virtues are discussed that are needed in people who work in participatory design (PD). The term PD is used here to refer specifically to an approach in designing information systems with its roots in Scandinavia in the 1970s and 1980s. Through the lens of virtue ethics and based on key texts in PD, the virtues of cooperation, curiosity, creativity, empowerment and reflexivity are discussed. Cooperation helps people in PD projects to engage in cooperative curiosity (...) and cooperative creativity. Curiosity helps them to empathize with others and their experiences, and to engage in joint learning. Creativity helps them to envision, try out and materialize ideas, and to jointly create new products and services. Empowerment helps them to share power and to enable other people to flourish. Moreover, reflexivity helps them to perceive and to modify their own thoughts, feelings and actions. In the spirit of virtue ethics—which focuses on specific people in concrete situations—several examples from one PD project are provided. Virtue ethics is likely to appeal to people in PD projects because it is practice-oriented, provides room for exploration and experimentation, and promotes professional and personal development. In closing, some ideas for practical application, for education and for further research are discussed. (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)

The objective of this article is to analyze the relationships between theories of strategic design and participatory design, in multiple commercial alliances between local entrepreneurs from different sectors and their integrated application in the urban context. Various authors have dealt with these strategic issues in isolation and less frequently have addressed them from the entrepreneurial experience. A review of the specific literature allows us to account for the main concepts involved in this approach. The case being analyzed (...) refers to a fitness-related venture in the city of La Plata, which articulated, together with other local actors, a collaborative strategy that led to the application of a superior business model for its sector. In addition, he capitalized on his role as an influencer on the social network Instagram, as a way to enhance the project’s comprehensiveness. The topics that are addressed synthesize the key concepts that allow us to interpret the praxis relieved. And from them, create a model that can be applied in other markets and territories to promote young local development. And in this way, different actors, complementary products and services serve to jointly promote a co-productive and self-managed culture. (shrink)

Objective We reviewed human–robot interaction (HRI) participatory design (PD) research with older adults. The goal was to identify methods used, determine their value for design of robots with older adults, and provide guidance for best practices. Background Assistive robots may promote aging-in-place and quality of life for older adults. However, the robots must be designed to meet older adults’ specific needs and preferences. PD and other user-centered methods may be used to engage older adults in the robot (...) development process to accommodate their needs and preferences and to assure usability of emergent assistive robots. Method This targeted review of HRI PD studies with older adults draws on a detailed review of 26 articles. Our assessment focused on the HRI methods and their utility for use with older adults who have a range of needs and capabilities. Results Our review highlighted the importance of using mixed methods and including multiple stakeholders throughout the design process. These approaches can encourage mutual learning (to improve design by developers and to increase acceptance by users). We identified key phases used in HRI PD workshops (e.g., initial interview phase, series of focus groups phase, and presentation phase). These approaches can provide inspiration for future efforts. Conclusion HRI PD strategies can support designers in developing assistive robots that meet older adults’ needs, capabilities, and preferences to promote acceptance. More HRI research is needed to understand potential implications for aging-in-place. PD methods provide a promising approach. (shrink)

Social technology can improve the quality of older adults' social lives and mitigate negative mental and physical health outcomes associated with loneliness, but it should be designed collaboratively with this population. In this paper, we used participatory design methods to investigate how robots might be used as social facilitators for middle-aged and older adults in both the US and Japan. We conducted PD workshops in the US and Japan because both countries are concerned about the social isolation of (...) these older adults due to their rapidly aging populations. We developed a novel approach to participatory design of future technologies that spends 2/3 of the PD session asking participants about their own life experiences as a foundation. This grounds the conversation in reality, creates rapport among the participants, and engages them in creative critical thinking. Then, we build upon this foundation, pose an abstract topic, and ask participants to brainstorm on the topic based on their previous discussion. In both countries, participants were eager to actively discuss design ideas for socially facilitative robots and imagine how they might improve their social lives. US participants suggested design ideas for telepresence robots, social distancing robots, and social skills artificial intelligence programs, while Japanese participants suggested ideas for pet robots, robots for sharing experiences, and easy-to-operate instructor robots. Comparing these two countries, we found that US participants saw robots as tools to help facilitate their social connections, while Japanese participants envisioned robots to function as surrogate companions for their parents and distract them from loneliness when they were unavailable. With this paper, we contribute to the literature in two main ways, presenting: A novel approach to participatory design of future technologies that grounds participants in their everyday experience, and Results of the study indicating how middle-aged and older adults from the US and Japan wanted technologies to improve their social lives. Although we conducted the workshops during the COVID-19 pandemic, many findings generalized to other situations related to social isolation, such as older adults living alone. (shrink)

A key challenge faced by organizations is to provide project teams with workspaces, information, and collaboration technologies that fosters creativity and high-performance team productivity. This requires understanding the relation between and impacts of (1) workspace, (2) activity and content that is created, and (3) social, behavioral, and cognitive aspects of work. This paper describes an exploratory study of everyday activities in the context of knowledge work in a shared workspace used by a high-tech global design team that explores future (...) products. The study formalizes key elements for productive knowledge work as a function of tasks, context, and team. It identifies enablers, hindrances, and requirements for physical, virtual, and social work environments. The study identified, through semi-structured interviews, surveys, and on-site shadowing, a key workspace component that facilitates dynamic participation of all team members. This workspace component is a wall used as a large, public, physical display surface for project content (the WALL). The WALL acts as a mediator for individual reflection-in-action and team reflection-in-interaction. It serves as “social glue” both between individuals and between geographically distributed subgroups. (shrink)

How do we ready ourselves to intervene responsively in the contingent situations that arise in co-designing to make change? How do we attune to group dynamics and respond ethically to unpredictable developments when working with 'community'? Participatory Design can contribute to social transitions, yet its focus is often tightly tuned to technique for designing ICT at the cost of participatory practice. We challenge PD conventions by addressing what happens as we step into a situation to alter it (...) with others, an aspect of practice that cannot be replicated or interchanged. We do so to argue that practices of readiness are constituted by personal histories, experiences, philosophies and culture. We demonstrate this political argument by giving reflexive accounts of our dimensions of preparation. The narratives here are distinct, yet reveal complementary theories and worldviews that shape PD ontologies. We have organized these around the qualities of punctuation and poise as a way to draw out some less easily articulated aspects of PD practice. (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)

The article examines the principles of Giancarlo De Carlo’s design approach. It pays special attention to his critique of the modernist functionalist logic, which was based on a simplified understanding of users. De Carlo′s participatory design approach was related to his intention to replace of the linear design process characterising the modernist approaches with a non-hierarchical model. Such a non-hierarchical model was applied to the design of the Nuovo Villaggio Matteotti in Terni among other projects. (...) A characteristic of the design approach applied in the case of the Nuovo Villaggio Matteotti is the attention paid to the role of inhabitants during the different phases of the design process. The article explores how De Carlo’s “participatory design” criticised the functionalist approaches of pre-war modernist architects. It analyses De Carlo’s theory and describes how it was made manifest in his architectural practice—particularly in the design for the Nuovo Villaggio Matteotti and the master plan for Urbino—in his teaching and exhibition activities, and in the manner his buildings were photographs and represented through drawings and sketches. The work of Giancarlo De Carlo and, especially, his design methods in the case of the Nuovo Villaggio Matteotti can help us reveal the myths of participatory design approaches within the framework of their endeavour to replace the representation of designers by a representation of users. The article relates the potentials and limits of De Carlo’s participatory design approach to more contemporary concepts such as “negotiated planning”, “co-production”, and “crossbenching”. The article also intends to explore whether there is consistency between De Carlo’s theory of participation and its application. (shrink)

Despite iterative learning design being increasingly implemented, such approaches are often delineated by well-defined periods of design/implementation. However, second-order cybernetics, which suggests a participatory approach to learning design, involves responsively adapting learning environments to meet students’ needs, treating them as agentic participants in the classroom. In our mixed methods study, we investigate whether such a process can facilitate egalitarian participation and collaborative interactions in a technology-assisted classroom. We use the example of a graduate psychology class of (...) 17 students and suggest that adaptation of live-chat activities by a participant observer on the Reddit social media platform that supplemented the in-person lecture dynamically, using a network analysis and qualitative ethnography as a modelling facility mimicked the ongoing feedback loops of social media platforms, enabling students to use social media with a critical eye, and engage in productive collaboration. Our quantitative results present network graphs for weekly eigen centrality to understand the egalitarian nature of the network, and transitivity to understand the likelihood for collaboration between more than two agents. Our qualitative results elaborate selected Reddit posts, and weekly field notes to explain how redesigning the chat weekly helped augment lecture-based discussion with the instructor and critique of student presentations, spurring egalitarian participation through a space-place dialectic. Students also provided end-semester feedback that was analyzed using inductive coding, to design future courseware. (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)

To accomplish a just transition, energy scenarios is a helpful tool. Participatory and deliberative methods are increasingly used when constructing and assessing energy scenarios to improve the democratic legitimacy of the results. This article contributes to the scientific debate by analyzing how such methods can include considerations of justice issues in a more systematic manner. It is based on a study of four workshops conducted in Sweden, in which the participants discussed different energy scenarios from a justice perspective. It (...) discusses what can be achieved by methods for participatory-deliberative ethics assessment of the consequences of energy scenarios and how such methods should be designed. (shrink)

BackgroundWork stress is a serious problem in primary education. Decades of research underline the importance of participatory, organizational-level work stress prevention approaches. In this approach, measures are planned to tackle causes of work stress in a participatory manner and implemented by a working group consisting of members of the organization. This approach can only be effective if the measures contain effective ingredients to decrease work stress risks and are successfully implemented. The aim of this paper is to present (...) an outline of a work stress prevention approach that is evaluated in primary education. To ensure the appropriateness of measures, a logic model of change is built as part of the risk assessment to facilitate the selection of appropriate measures. Progression on target behaviors as well as implementation factors are real-time monitored during implementation and fed back to the working groups, to provide the opportunity to adjust action plans when needed to optimize implementation.MethodsThe approach consists of five steps: preparation: installing an advisory board and working groups, risk assessment: inventory of work stress risks. In addition, a behavioral analysis is performed to build a logic model of change to facilitate selection of measures, action planning: conducting an action plan with appropriate measures, implementation: implementing the action plan. During implementation progression on target behaviors and implementation factors are monthly monitored and fed back to the working groups, and evaluation: effects of the approach are studied in a controlled trial with measurements at baseline, 1 year, and 2 years follow-up. A process evaluation is carried out using quantitative and qualitative data to study the implementation process of all steps of the work stress approach.DiscussionWe believe that building a logic model of change and real-time monitoring of implementation could be of added value to improve the success of the work stress prevention approach. With this study, we aim to provide more insights into work stress intervention research, especially in primary education.Clinical Trial RegistrationThe study is registered in Netherlands Trial Register. (shrink)

This participatory study recounts conversational practices occurring between three teachers, a head of school, and a researcher during a month-long curriculum design workshop mediated by the MagicSchool AI technology to create social studies, language arts, science, and mathematics lessons for a virtual special education program. A social paradigm of AI-mediated educational practices is presented, wherein teachers interact with AI tools by embodying co-agency and a spirit of inquiry. Collective practices are interpreted using Gordon Pask’s conversation theory framework, showcasing (...) how to design systems of human-AI feedback loops devoted towards curriculum design. Meeting transcriptions, AI-prompt data, AI-mediated lesson plans, teacher feedback, and final products are shared using narrative inquiry to illustrate how collaborative co-agency culminated in lesson plans that co-observers felt confident in deploying. (shrink)

In this article we offer a single case study using an action research method for gathering and analysing data offering insights valuable to both design and research supervision practice. We do not attempt to generalise from this single case, but offer it as an instance that can improve our understanding of research supervision practice. We question the conventional ‘dyadic’ models of research supervision and outline a more collaborative model, based on the signature pedagogy of architecture: the design studio. (...) A novel approach to the supervision of creatively oriented postgraduate students is proposed, including new approaches to design methods and participatory supervision that draw on established design studio practices. This model collapses the distance between design and research activities. Our case study involving Master's Research Students supervision in the discipline of Architecture, shows how ‘connected learning’ emerges from this approach. This type of learning builds strong elements of creativity and fun, which promote and enhance student engagement. The results of our action research suggest that students learn to research more easily in such an environment and supervisory practices are enhanced when we apply the techniques and characteristics of design studio pedagogy to the more conventional research pedagogies imported from the humanities. We believe that other creative disciplines can apply similar tactics to enrich both the creative practice of research and the supervision of HDR students. (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 (...) class='Hi'>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)

The use of computers to support learning at work has for long been propagated. Although a large bulk of experience exists in this field, it is still an open question what role computer applications play and can play in the process of learning. It can even be questioned if the learning processes themselves are sufficiently well understood to enable designers and others to provide relevant support. In this article these questions are addressed with reference to experience gained with two projects (...) on computer support for shop floor learning. The projects involved the future users actively in the design process and it is argued that this involvement reached far beyond the mere shaping of the learning artefacts. (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)

Focusing democratic theory on the pressing issue of punishment, Punishment, Participatory Democracy, and the Jury argues for participatory institutional designs as antidotes to the American penal state. Citizen action in institutions like the jury and restorative justice programs can foster the attunement, reflectiveness, and full-bodied communication needed as foundations for widespread civic responsibility for criminal justice.

Se realizó un trabajo de educación en valores humanos con métodos participativos en estudiantes del nuevo modelo formativo de Enfermería de la Universidad de Ciencias Médicas de Camagüey en la Filial de Nuevitas, para la ejecución de la tarea se capacitó a profesores y tutores, objetivo por el cual se diseñó la estrategia educativa. Se enunciaron las dificultades del objeto de investigación, resultado del diagnóstico aplicado, se confirmó la ausencia de estrategia educativa en el uso de métodos participativos con tal (...) fin, y la necesidad del diseño. Se utilizaron las etapas dirigidas a la capacitación, la sensibilización, la planificación, la valoración y el control de la ejecución del sistema de acciones con el colectivo pedagógico para el perfeccionamiento de la educación en valores con estos métodos. A teaching work based on human values with the implementation of participatory methods was carried out for Nursing students of the new training model at the seat of the Medical University of Camagüey in Nuevitas. Tutors and professors were trained to put this task into practice, reason why the teaching strategy was designed. The difficulties of the research object as a result of the applied diagnosis were set out. The lack of a teaching strategy in the use of participatory methods for this purpose, and the need of the design were stated. Stages aimed at training, awareness-raising, planning, assessment and control of the system of actions implementation with the pedagogical team in order to improve values education with these methods, were used. (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)

Participatory design amalgamates the expertise of interdisciplinary specialists with the taskspecific expertise of end-users. Groupware design is widely recognised as benefiting from participative approaches. Recognition of this ideal, however, does not preclude the failure of groupware design due to poor communication and inadequate understanding between participants. We provide a grounding in the problems affecting groupware success, and introduce four design principles that guide all those involved in design around the pitfalls that have been encountered, (...) some repeatedly, by groupware. (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)

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)

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)

The requirement that theoretical and empirical research is to sustainably benefit not only the nominal researcher, but also the other research participants, is deeply embedded in the conceptual-analytical framework of Psychology from the Standpoint of the Subject and its co-researcher principle. PSS research is thus to be of emancipatory relevance to those others the researcher comes to collaborate with. Meanwhile, the question of how this requirement can be prospectively integrated into the design of a research project remains subject to (...) debate. This question emerges as particularly difficult to tackle in research projects that engage in co-research with young children: How can a researcher ensure that the young children s-he works togethe with benefit from the research project? Based on the critical analysis of an earlier research project implemented by the author, the contribution at hand suggests that PSS’ foundational notion of emancipatory relevance needs to be revisited. It argues that if a research project is to sustainably benefit young co-researchers, the technical relevance of the expected mutual emancipation should as well be explicitly considered in the project design. A discussion of recent methodological developments in child-targeted Participatory Design and Human-Computer Interaction serve as inspiration for this conceptual specification. The contribution thereby invites co-research to further investigate how emancipatory relevance cannot only to be methodologically attained via dissemination of research results and conceptual developments, but also via the actual research process it attempts to engage the co-researchers in irrespective of their age. (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)

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)

The advance in Internet of Things technology has increased the opportunities for a healthcare system design, which is an urgent need owing to the growth in population among the older adults in many countries. This requires giving thought to the kind of innovative technological design methods that can find suitable solutions for home care. The application of Health Smart Homes by means of the technologies of the Internet of Things, can be used to support rehabilitation treatment and help (...) the senior citizens to understand the importance of taking measures to maintain a healthy standard of living that can meet their needs. The aim of this article is to develop and assess a design method for the following purposes: to determine and map out the physical and emotional state of the home care users, such as senior citizens; to implement a participatory design that includes the user within its social, psychological and therapeutic context; to explore the flexible method when applied to older users; to provide a way for the users to be “personalized” through a wide range of solutions that involve analyzing the behavioral patterns of different individuals in a standardized manner and to define a set of smart technologies for each problem and senior citizen. This article sets out a collaborative method called FlexPersonas, which is employed for the flexible mapping of users and to improve decision-making with the support of Internet of Things technologies. In this context, computing systems can identify the behavior of the user and issue warnings to the Carers about any abnormal event. Studies with an interdisciplinary team point out the potential and drawbacks of the method. (shrink)

Putting laypeople in an active role as direct expert contributors in the design of service robots becomes more and more prominent in the research fields of human–robot interaction and social robotics. Currently, though, HRI is caught in a dilemma of how to create meaningful service robots for human social environments, combining expectations shaped by popular media with technology readiness. We recapitulate traditional stakeholder involvement, including two cases in which new intelligent robots were conceptualized and realized for close interaction with (...) humans. Thereby, we show how the robot narrative together with aspects of power balancing stakeholders, such as hardware constraints and missing perspectives beyond primary users, and the adaptivity of robots through machine learning that creates unpredictability, pose specific challenges for participatory design processes in HRI. We conclude with thoughts on a way forward for the HRI community in developing a culture of participation that considers humans when conceptualizing, building, and using robots. (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)

In the age of Big Data, companies and governments are increasingly using algorithms to inform hiring decisions, employee management, policing, credit scoring, insurance pricing, and many more aspects of our lives. Artificial intelligence systems can help us make evidence-driven, efficient decisions, but can also confront us with unjustified, discriminatory decisions wrongly assumed to be accurate because they are made automatically and quantitatively. It is becoming evident that these technological developments are consequential to people’s fundamental human rights. Despite increasing attention to (...) these urgent challenges in recent years, technical solutions to these complex socio-ethical problems are often developed without empirical study of societal context and the critical input of societal stakeholders who are impacted by the technology. On the other hand, calls for more ethically and socially aware AI often fail to provide answers for how to proceed beyond stressing the importance of transparency, explainability, and fairness. Bridging these socio-technical gaps and the deep divide between abstract value language and design requirements is essential to facilitate nuanced, context-dependent design choices that will support moral and social values. In this paper, we bridge this divide through the framework of Design for Values, drawing on methodologies of Value Sensitive Design and Participatory Design to present a roadmap for proactively engaging societal stakeholders to translate fundamental human rights into context-dependent design requirements through a structured, inclusive, and transparent process. (shrink)

Implicit in the value sensitive design (VSD) approach is a concern for understanding, and where possible, disrupting problematic power relationships. Yet an awareness of the issues and ethics of power relations is a pre-requisite for such a concern to bear fruit. This article provides some insight into the issues, and through a case study of technology design to support care arrangements for age-related cognitive decline, illustrates how finding a satisfactory resolution can be particularly troublesome.

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)

Purpose The purpose of this paper is to present a systematic literature review of empirical studies into online platforms for political participation. The objective was to diagnose the relationship between different types of digital participatory platforms, the real possibilities of participation generated by those initiatives and the impact of such participation on the decision-making process of governmental representatives. Design/methodology/approach A systematic literature review was conducted using pre-defined terms, expressions and criteria. A total of 434 articles from 1995 to (...) 2015 were gathered from the Web of Science database. And, 32 studies were selected from those articles for meta-synthesis, and the cases investigated were evaluated according to the e-participation ladder model. Findings The results indicated that online political participation worldwide remains timid both in quantity and quality. We have witnessed the growth of a kind of “rhetorical participation” promoted by policy-makers and the rise of a “participatory despotism”, in which only the privileged partake, while the majority remains silent. Practical implications The solutions found to promote increased participation and ensure its effectiveness ranged from shaping the platform design in accordance with citizens’ capacities and interests to a need for profound political–administrative change, which includes the world’s public agencies adopting a more transparent, inclusive and collaborative approach to decision-making. Originality/value This paper proposes a systematic review, mapping the studies on online platforms for political participation, analysing the questions, methods and conclusions found by the authors and evaluating each case study with a participation ladder. (shrink)

PurposeThis paper aims to inform and improve the quality of electronic products and services by outlining an approach to ethically grounded design.Design/methodology/approachA number of design disciplines were investigated using desk research and also learning from experience in commercial design practice in the mobile phone, Internet and software industries.FindingsIt is suggested that design “scripts” specific behaviours with either good or bad results. Scripts have a behavioural element and they define the physical, social and individual impact of (...) products and services. This suggests that designers should be aware of the impact design decisions have throughout the product lifecycle. In order to achieve this, three ethical design principles (situated research, reflexivity and participation) are proposed to frame ethical design practice.Research limitations/implicationsIt is suggested that measuring impact alone is insufficient to minimise harm caused by electronic products and services. Instead, research should focus on positively informing design through actionable results in the participatory design tradition. Conversely, design needs to accommodate research into measuring the impact of products in order to deliver long‐term benefits to users rather than perpetuating passive consumption.Practical implicationsThe paper provides an overview of methods for value‐centred interaction design based on the analysis of alternative approaches to ethical design.Originality/valueThe research in the paper spans a number of related but heretofore separate disciplines pertinent to deepening design thinking. These disciplines are critiqued on the basis of their appropriateness and applicability to an ethical design approach and the concept of scripting, used in traditional design, is applied to interactivity. Lastly, three new principles are proposed for ethically grounded design. (shrink)

Participatory sense-making is already an established concept within enactivism. It is used to define the participatory nature of cognitive relations, designating that humans and other organisms make sense of their surrounding environments not just on their own. They build cooperative networks, working together, to create ways of making sense of the world. However, so far little attention has been paid to how enactive concepts, such as participatory sense-making, may apply to the field of bioethics, understood here as (...) health care ethics. In this paper, I examine health care practices cases of participatory sense-making. The paper aims to show that relations between patients and health care providers (HCPs) can be understood as participatory sense-making relations. To make my case, I discuss the so-called phenomenological interview, as proposed technique in health care. I argue that this interview technique has essential features that can be viewed also as features of participatory sense-making. More specifically, the phenomenological interview is an open-minded, a critical, and pro-active dialogue between patient and health care provider that is meant for the patient to raise self-awareness of their body and medical condition, as well as of the social conditions that may affect that experience and condition. I will argue that phenomenological interviews are exemplary cases of patient-health care provider relations in which both parties actively work together to make sense of what the patient is going through and to find adequate medical responses to that experience. I will conclude by proposing normative guidance based on my analysis of health care practice as participatory sense-making. I argue that viewing patient-HCP relations as participatory sense-making may be helpful for both patients and health care providers in that it shows that health care practice is not just a technical exercise or routine task, but essentially relational and patient-oriented. (shrink)

This article starts with a case outlining ethical challenges encountered in participatory action research (PAR) on vaccine hesitancy in rural India during Covid-19. Community researchers were recruited by a not-for-profit organisation, with the aim of both discovering the reasons for vaccine hesitancy and encouraging take-up. This raised issues about the roles and responsibilities of local researchers in their own communities, where they might be blamed for adverse reactions to vaccination. They and their mentor struggled with balancing societal protection against (...) individual rights to make choices. These themes are explored in two commentaries discussing the difficulties in balancing ethics in public health (prioritising societal benefits), social research (protecting participants from harm and respecting their rights not to be involved) and participatory research practices (maximising democratic participation and decision-making). As discussed in the first commentary, often these cohere, but tensions can arise. The second commentary also raises the issue of epistemic justice, questioning the extent to which the villagers could have a say in the design, implementation and interpretation of the research, and the dangers of not hearing the voices and arguments of people who reject vaccination. The case and commentaries highlight the complexities of PAR and additional challenges in a public health context. (shrink)

This paper will describe a participatory design process by which individuals from many levels of hierarchy and diverse technical background envisioned and then determined the design criteria for the software system to support the delivery of high quality nursing services.

of democratizing social inquiry by actively engaging the subject in the design and conduct of research. Drawing on four examples of PAR-based social science and a democratic reconstruction of "epistemic privilege," this article argues that philosophers need to take seriously PAR's notion that democratic norms should guide social inquiry. But it does not advocate replacing mainstream or expert-directed social science by PAR. Instead, it maintains that it is both possible and sensible for PAR practitioners to collaborate with conventional research. (...) Indeed, certain forms of nonparticipatory social science seem indispensable for any extensive application of the PAR framework. The article concludes by drawing out its (controversial) implications for two central issues in the philosophy of social science: first, that the methods of social inquiry are distinct from those in the natural sciences and, second, that there is a sense in which social research can and should be "value neutral.". (shrink)