Au polyhandicap sévère, la société a réagi de trois manières différentes : par une « hémiplégie » visuelle d’abord, en l’ignorant, par une atteinte de son narcissisme, liée à sa culpabilité de le rejeter, et par une effraction enfin des enveloppes familiales. Pour les familles et les équipes éducatives, c’est la rencontre pérenne avec la différence, le traumatisme, mais aussi avec le déni. Même si historiquement cette prise en compte évolue, un travail de lien est à réaliser, ce que l’auteure (...) illustre par diverses situations issues de sa pratique. (shrink)

Cover -- Half Title -- Title Page -- Copyright Page -- Contents -- Notes on Contributors -- Introduction to the Series -- Acknowledgements -- 1. Introduction -- 2. Oral History as Genre -- 3. Silences -- 4. A Brazilian Worker's Autobiography in an Unexpected Form -- 5. Family Fables -- 6. Anecdote as Narrative Resource in Working-Class Life Stories -- 7. My Life as Consumer -- 8. Distant Homes, Our Genre -- 9. The Oral History Interview in a Cross-Cultural Setting (...) -- 10. In the Archieve, In the Field -- 11. Sharing and Resharing Life Stories -- Raphael Samuel -- Raphael Samuel -- A Call for Contributors -- Index. (shrink)

In the wake of the collapse of the Soviet bloc, it is timely to ask what continuing role, if any, the concept of sovereignty can and should play in the emerging "new world order." The aim of _Law, Power, and the Sovereign State_ is both to counter the argument that the end of the sovereign state is close at hand and to bring scholarship on sovereignty into the post-Cold War era. The study assesses sovereignty as status and as power and (...) examines the issue of what precisely constitutes a sovereign state. In determining how a political entity gains sovereignty, the authors introduce the requirements of de facto independence and de jure independence and explore the ambiguities inherent in each. They also examine the political process by which the international community formally confers sovereign status. Fowler and Bunck trace the continuing tension of the "chunk and basket" theories of sovereignty through the history of international sovereignty disputes and conclude by considering the usefulness of sovereignty as a concept in the future study and conduct of international affairs. They find that, despite frequent predictions of its imminent demise, the concept of sovereignty is alive and well as the twentieth century draws to a close. (shrink)

This book is the most comprehensive and rigourous critique of the ways disciplinary boundaries still inhibit knowledge-production and integration.

Acknowledgments THROUGHOUT this book I cite the many people who have provided information on individual programs and activities. ...

Beyond Interdisciplinarity examines the broadening meaning of core concept across academic disciplines and other forms of knowledge. In this book, Associate Editor of The Oxford Handbook of Interdisciplinarity and internationally recognized scholar Julie Thompson Klein depicts the heterogeneity and boundary work of inter- and trans-disciplinarity in a conceptual framework based on an ecology of spatializing practices in transaction spaces, including trading zones and communities of practice. The book includes both "crossdisciplinary" work (encompassing multi-, inter-, and trans-disciplinary forms) as (...) well as "cross-sector" work (spanning disciplines, fields, professions, government and industry, and communities). The first section of the book defines and explains boundary work, discourses of interdisciplinarity, and the nature of interdisciplinary fields. In the second section, Klein examines dynamics of working across disciplines, including communication, collaboration, and learning with concrete examples and lessons from research projects and programs that transcend traditional fields. The closing chapter examines reasons for failure and success then presents gateways to literature and other resources. Throughout the book, Klein emphasizes the roles of contextualization and historical change while factoring in the shifting relationship of disciplinarity and interdisciplinarity, ascendancy of transdisciplinarity, and intersections with other constructs including Mode 2 knowledge production, convergence, team science, and postdisciplinarity. The conceptual framework she provides also includes the role of boundary objects, agents, and organizations in brokering differences and creating for platforms for change. Klein further explains why translation, interlanguage, and a communication boundary space are vital to achieving intersubjectivity and collective identity. They foster not only pragmatics of negotiation and integration but also reflexivity, transactivity, and co-production of knowledge with stakeholders beyond the academy. Rhetorics of holism and synthesis compete with instrumentalities of problem solving and transgressive critiques. However, typical warrants today include complexity, contextualization, collaboration, and socially-robust knowledge. Crossing boundaries remains complex, but this book guides readers through the density of pertinent literature while expanding understandings of crossdisciplinary and cross-sector work. (shrink)

The difficulty of handling complex problems has spawned challenges to the traditional paradigm of technical rationality in design, planning, and policy making. One of the most frequently proposed solutions is an interdisciplinary approach, though few writers have described the operational dynamics of such an approach. A global model of interdisciplinary problem-solving is presented based on the premise that the unity of the interdisciplinary approach derives from the creation of an intermediary process that relies on common language, shared information, a mutual (...) sense of stakeholding, and the resolution of disciplinary differences. The theoretical underpinning of this approach is the conceptualization of interdisciplinary problem-solving as a communicative process that requires attention to the rhetorical and political dynamics of working with competing interests, practices, and disciplines. The practice portion is a composite picture of effective models, skills, activities, strategies, and techniques employed by actuals interdisciplinary teams. This global model offers a way of both theoretically and practically visualizing Th. K. van Lohuizen's ideal of achieving unity of town planning, an ideal that has profound implications for the organization of both professional practice and training. (shrink)

This discourse analysis of metaphors of the crossdisciplinary composite of inter- and trans-disciplinary research gleans in sights for science today. The first section establishes a baseline by comparing spatial images to growing use of organic metaphors in an ecology of knowledge production. Following logically from the comparison, the second reflects on metaphors of exchange and transaction in trading zones, transaction spaces, and third spaces, then addresses implications for the earlier exemplar of Mode 2 knowledge production. The third section considers the (...) current exemplar of convergence as a new dynamic of fundamental and applied research then challenges the premise translation is a one-way transfer and application of findings from one domain to another, thereby recognizing complexity of relational capital, platforms as sites of collaboration, and ensuing tensions. The fourth reflects a widespread tendency to map domains of knowledge, building on Sheila Jasanoff’s cartographic metaphor of Science, Technology, and Society Studies as an archipelago and broader implications for the nature and status of interdisciplinary fields. The fifth section weighs the balance of disciplinarity and interdisciplinarity, questioning the premise of a New Disciplinarity reinscribing a disciplinary home versus transversal flow and flux. The sixth recognizes growing momentum for decolonizing crossdisciplinarity, including the role of lay, traditional, and Indigenous knowledge in fostering a transdisciplinary science of sustainability. The seventh closing section reflects on preceding metaphors against the backdrop of a century of developments that have made interdisciplinarity and transdisciplinarity part of the fabric of science today, though more often in incremental ways than radical refiguration. (shrink)

Volume 20, Issue 5, June 2020, Page 72-74.

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Taking stock of interdisciplinarity as it nears its century mark, the Oxford Handbook of Interdisciplinarity constitutes a major new reference work on the topic of interdisciplinarity, a concept of growing academic and societal importance.

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced (...) by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

In Vanuatu, small-scale farmers’ subsistence still largely relies on the sustainable use and maintenance of a wide-ranging biodiversity out of which root and tuber crops provide the bulk of daily subsistence. In neighboring countries, foreign influence since the first European contacts, further associated changes and the introduction of new crop species have induced a loss of cultivated diversity. This paper presents a baseline study of the diversity of root and tuber crops in ten communities throughout Vanuatu. In a context where (...) the smallholders’ agrosystems are increasingly considered as key components for the global conservation of crop genetic resources, this study provides clues to better understand the effective roles of biodiversity in traditional agrosystems. It also provides insights on the rationale behind the constitution of agricultural portfolios and discusses how the cultivated diversity allows communities to cope with changes and pressures. The paper also shows that recently introduced crops neither seem to have compromised agricultural diversity nor drastically changed the agrosystems in Vanuatu. On the contrary, such crops are used by farmers to strengthen the resilience of their agrosystems. A discussion then presents the idea of continuity through change and novelty as a critical factor for resilience. The paper concludes by discussing the role of indigenous agriculture and culture in ensuring food security and in development strategies in a larger context. (shrink)

In cognitive science, there is a tacit norm that phenomena such as cultural variation or synaesthesia are worthy examples of cognitive diversity that contribute to a better understanding of cognition, but that other forms of cognitive diversity (e.g., autism, attention deficit hyperactivity disorder/ADHD, and dyslexia) are primarily interesting only as examples of deficit, dysfunction, or impairment. This status quo is dehumanizing and holds back much-needed research. In contrast, the neurodiversity paradigm argues that such experiences are not necessarily deficits but rather (...) are natural reflections of biodiversity. Here, we propose that neurodiversity is an important topic for future research in cognitive science. We discuss why cognitive science has thus far failed to engage with neurodiversity, why this gap presents both ethical and scientific challenges for the field, and, crucially, why cognitive science will produce better theories of human cognition if the field engages with neurodiversity in the same way that it values other forms of cognitive diversity. Doing so will not only empower marginalized researchers but will also present an opportunity for cognitive science to benefit from the unique contributions of neurodivergent researchers and communities. (shrink)

Arts and Humanities in Higher Education, Volume 21, Issue 2, Page 198-219, April 2022. This article presents playfulness as an emerging approach to learning in higher education that emphasises the arts and humanities across disciplines. The article is based on a qualitative, hermeneutical literature review in light of educational culture in higher education. The literature review indicates that playful approaches to learning stand in opposition to educational cultures that focus on rapidness and student performance. However, an educational culture of play (...) is about to establish itself, and this culture of play emphasises creativity in learning and human flourishing in education, perspectives that are connected to arts and humanities. The main findings cultures of time, performance and play lead to several questions about societal, institutional, and organisational educational culture, and regarding approaches to teaching, learning, humanity and society. The main contribution of this article is that a focus on playfulness offer the field of arts and humanities new possibilities in future education. (shrink)

This paper will explore the relationship between Mezirow's concept of reflexivity and Bourdieu's theory of habitus in order to develop a more robust framework within which critical reflection can take place. Nurse educators have sought to close the theory practice gap through the use of critical reflection. However, we are not convinced that this has produced the depth and quality of reflection required. Furthermore, the contexts in which critical reflection takes place is often sidelined or erased so that the whole (...) impetus in the literature is to educate nurses in reflection rather than empower nurses to understand the complex circumstances and barriers that obstruct critical reflection. This paper argues that the reason for this position is that nurse education does not always acknowledge the role that personal and cultural values systems have on reflective practices. The literature search was undertaken using CINHAL and MEDLINE. Keywords included: values systems, habitus, and critical reflection. Inclusion criteria were determined by the theoretical approach and included seminal texts, from as far back as 1956, to identify key themes. Although critical reflection is a potentially powerful way of enhancing care it has often failed to do so. It is suggested that this is because nurse educators have frequently used models of reflection without considering the impact that student's personal values systems has on their perceptions of care and subsequently care delivery. The purpose of this paper is to promote deeper levels of reflection and is part of a programme of research aimed at developing a more robust approach to reflection in educational practice. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec professionals’ (...) perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

The continued development of General Circulation Models (GCMs) towards increasing resolution and complexity is a predominantly chosen strategy to advance climate science, resulting in channelling of research and funding to meet this aspiration. Yet many other modelling strategies have also been developed and can be used to understand past and present climates, to project future climates and ultimately to support decision-making. We argue that a plurality of climate modelling strategies and an equitable distribution of funding among them would be an (...) improvement on the current predominant strategy for informing policy making. To support our claim, we use a philosophy of science approach to compare increasing resolution and complexity of General Circulation Models with three alternate examples: the use of machine learning techniques, the physical climate storyline approach, and Earth System Models of Intermediate Complexity. We show that each of these strategies prioritises a particular set of methodological aims, among which are empirical agreement, realism, comprehensiveness, diversity of process representations, inclusion of the human dimension, reduction of computational expense, and intelligibility. Thus, each strategy may provide adequate information to support different specific kinds of research and decision questions. We conclude that, because climate decision-making consists of different kinds of questions, many modelling strategies are all potentially useful, and can be used in a complementary way. (shrink)

Background A significant number of women experience childbirth as traumatic. These experiences are often characterised by a loss of control coupled with a perceived lack of support and inadequate communication with health care professionals. Little is known about the choices women make in subsequent pregnancy(s) and birth(s), or why they make these choices. This study aimed to understand these choices and explore the reasons behind them. Methods A longitudinal Grounded Theory Methods (GTM) study involving 9 women was conducted. Over half (...) of the participants had a formal diagnosis of PTSD and/or PND related to the previous birth. Interviews were carried out at 3 timepoints perinatally. These findings are from the first interviews at 12-20 weeks. Results From the first days of pregnancy, this cohort of women were focused on concerns that this birth would be a repeated traumatic experience. The women were deliberately searching out and analysing information about their choices in this pregnancy and birth, and making plans which had two aims; firstly to avoid a repeat of their previous birth experience, and secondly to avoid a loss of control to other people during the birth. The women considered a range of birth choices, from elective caesareans to freebirth. Some women felt well supported by those around them, including health care professionals, partners, friends and family. Others did not, and were anticipating conflict in trying to assert their birth choices. Many early relationships with health care professionals were characterised by fear and mistrust. Discussion Women who have previously experienced a traumatic birth become pregnant again, have a strong desire to avoid a repeat experience and to feel in control of their birth choices. Access to robust information appears to help reduce uncertainty and arm women in their discussions with professionals. Similarly making plans and seeking to have them agreed with health care professionals at an early stage is used a way to reduce the risk of having a further traumatic experience. Implications for practice include supporting women in formulating and confirming pregnancy and birth plans at an early stage to reduce uncertainty and foster a sense of control. (shrink)

BackgroundThe spread of COVID-19 has disrupted the lifestyles of the world’s population. In the workplace, the pandemic has affected all sectors and has changed the way work is organized and carried out. The health sector has been severely impacted by the pandemic and has faced enormous challenges in maintaining healthcare services while providing care to those infected by the virus. At the heart of this battle, healthcare managers were key players in ensuring the orchestration of operations and the physical and (...) mental availability of employees during the crisis. Although few studies have been conducted to identify organizational practices or leadership skills to be adopted in a crisis context, the concrete behaviors of managers have not been documented yet. Therefore, this study aims at filling this gap by studying middle managers’ behaviors facing COVID-19 crisis in the healthcare sector.MethodsUsing a qualitative approach, eight focus groups were conducted online during the pandemic with 37 middle managers from the healthcare community of a Quebec health establishment from April to June 2020. Thematic analyses were conducted, and a mixed-methods approach was used to analyse the data based on Viitala’s hierarchical model of management skills.ResultsBased on the six managerial skills proposed in the model of Viitala, 21 specific management behaviors were identified as having been deployed by middle managers at the beginning of the pandemic. Considering that the health sector has been profoundly shaken by this health crisis, in addition to being an environment likely to experience other crises, managers need to develop practical skills in various crisis management situations. Thus, the results guide practitioners by highlighting the importance of team-oriented management behaviors, especially in a crisis context. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

Reclaiming the Wild Soul takes us on a journey into Earth's five great landscapes - deserts, forests, oceans and rivers, mountains, and grasslands - as aspects of our deeper, wilder selves. Where the inner and outer worlds meet we discover our own true nature mirrored in the Earth's wild beauty and fierce challenges. A powerful archetypal model for transformation, the "soulscapes" return us to a primal terrain rich in knowing, healing, and wholeness. To guide our path, each soulscape offers up (...) wisdom in the form of soul qualities the modern world often undervalues and even undermines. We see how deserts model simplicity and silence, how forests help us make peace with uncertainty, how rivers and oceans reveal the power of flow, how mountains inspire our highest purpose, and how grasslands teach us about giving back. Weaving personal story with poetry, imagery, and explorations, Reclaiming the Wild Soul is simultaneously self-help and a courageous call to action. It is written for all those disillusioned with our hyper-paced, high-tech world, who decry what we are doing to the Earth, who feel the tug of their own wild souls longing for discovery and mystery - a new, yet ancient, way of being human. (shrink)

In this article, I explore the auditory technopolitics of prenatal sound systems, asking what kinds of futures, listeners and temporalities they seek to produce. With patents for prenatal audio apparatus dating back to the late 1980s, there are now a range of devices available to expectant parents. These sound technologies offer multiple benefits: from soothing away stress to increasing the efficiency of ultrasonic scans. However, one common point of emphasis is their capacity to accelerate foetal ‘learning’ and cognitive development. Taking (...) as exemplary the Babypod and BabyPlus devices, I argue that prenatal sound systems make audible a particular figuration of pregnancy and gestational labour that combines divergent notions of responsibility and passivity. Contra the equation of neoliberalism with self-control and individualism, I argue that prenatal sound systems amplify neoliberal capitalism’s elision of personal, maternal and familial responsibility. As reproductive sound technologies, prenatal sound systems facilitate maternal–familial investment in the pre-born as future-child. Consequently, financialised notions of inheritance are substituted for biological inheritance. Drawing attention to the common rhetorical figuration of the sonic as womb-like, furthermore, I argue that prenatal sound systems exemplify what I refer to as uterine audiophilia. By treating the womb as ‘the perfect classroom’, prenatal sound systems imply an intense maternal obligation to invest in and impress upon the future-child, while also envisioning the pregnant person’s body as an occupied, resonant space. Cohering with a fidelity discourse that posits the reproductive medium as passive container and a source of noise that is to be overcome, uterine audiophilia relies upon politically regressive conceptualisations of pregnancy. I thus argue that these devices mark the hitherto under-theorised convergence of auditory culture, technology and reproductive politics. (shrink)

Jusqu’à une date récente, la voiture reposait sur des principes bien établis de mécanique et de thermodynamique, elle doit maintenant intégrer les technologies numériques. Tiraillé entre l’appel du progrès et les peurs qui y sont associées, le législateur a un rôle clé à jouer dans les nombreux domaines qui seront touchés par la montée en puissance de l’intelligence artificielle. Sous le chapitre des véhicules autonomes tout particulièrement, accepter de confier sa sécurité à une intelligence artificielle est un pas essentiel, mais (...) délicat, dans le processus du développement. C’est pourquoi on peut se demander si le principe de précaution pourrait protéger efficacement contre les appréhensions légitimes liées à ces innovations. (shrink)

Virtue and the Moral Life brings together distinguished philosophers and theologians with younger scholars of consummate promise to produce ten essays that engage both academics and students of ethics. This collection explores the role virtues play in identifying the good life and the good society.

Virtue and the Moral Life brings together distinguished philosophers and theologians with younger scholars of consummate promise to produce ten essays that engage both academics and students of ethics. This collection explores the role virtues play in identifying the good life and the good society.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)