The thesis of this article is that engagement and suffering are essential aspects of responsible caregiving. The sense of medical responsibility engendered by engaged caregiving is referred to herein as clinical phronesis, i.e. practical wisdom in health care, or, simply, practical health care wisdom. The idea of clinical phronesis calls to mind a relational or communicative sense of medical responsibility which can best be understood as a kind of virtue ethics, yet one that is informed by the exigencies of moral (...) discourse and dialogue, as well as by the technical rigors of formal reasoning. The ideal of clinical phronesis is not (necessarily) contrary to the more common understandings of medical responsibility as either beneficence or patient autonomy — except, of course, when these notions are taken in their disengaged form (reflecting the malaise of modern medicine). Clinical phronesis, which gives rise to a deeper, broader, and richer, yet also to a more complex, sense than these other notions connote, holds the promise both of expanding, correcting, and perhaps completing what it currently means to be a fully responsible health care provider. In engaged caregiving, providers appropriately suffer with the patient, that is, they suffer the exigencies of the patient's affliction (though not his or her actual loss) by consenting to its inescapability. In disengaged caregiving — that ruse Katz has described as the silent world of doctor and patient — provides may deny or refuse any given connection with the patient, especially the inevitability of the patient's affliction and suffering (and, by parody of reasoning, the inevitability of their own. When, however, responsibility is construed qualitatively as an evaluative feature of medical rationality, rather than quantitatively as a form of calculative reasoning only, responsibility can be viewed more broadly as not only a matter of science and will, but of language and communication as well — in particular, as the task of responsibly narrating and interpreting the patient's story of illness. In summary, the question is not whether phronesis can save the life of medical ethics — only responsible humans can do that! Instead, the question should be whether phronesis, as an ethical requirement of health care delivery, can prevent the death of medical ethics. (shrink)

Until now, the mass spread of fake news and its negative consequences have implied mainly textual content towards a loss of citizens' trust in institutions. Recently, a new type of machine learning framework has arisen, Generative Adversarial Networks (GANs) – a class of deep neural network models capable of creating multimedia content (photos, videos, audio) that simulate accurate content with extreme precision. While there are several areas of worthwhile application of GANs – e.g., in the field of audio-visual production, human-computer (...) interactions, satire, and artistic creativity – their deceptive uses, at least as currently foreseeable, are just as numerous and worrying. The main concern is linked to the so-called “deepfakes”, fake images or videos that simulate real events with extreme precision. When trained on a human face, GANs can make the face assume hyper-realistic movements, expressions and (verbal and non-verbal) communication abilities. This technology poses an urgent threat to the governance of democratic processes concerning the production of public opinions and political discourses, with significant potential for reality-altering and disinformation. After a short introduction of their current technical state-of-the-art, in this paper we want to enquire the GANs` socio-technical system alongside different and intertwined philosophical accounts. Firstly, we will argue about the conditions that make perceived a GANs-generated content as trustworthy, arguing also about the general effects GANs might have on the perceived trustworthiness of individuals. Thereafter, we will discuss about the inadequacy to approach GANs only as perception-altering technology. Against this backdrop, we will propose a theoretical turn that considers the human-machine relationships of trustworthiness as elements of a broader hybrid socio-technical systems. This turn come up with political repercussions that we will discuss in the last part of the paper. (shrink)

When firm misconduct comes to light, CEOs are often faced with difficult decisions regarding whether and how to respond to stakeholder demands as they attempt to restore their firms’ legitimacy. Prior research largely assumes that such decisions are motivated by CEOs’ calculated attempts to manage stakeholder impressions. Yet, there are likely other motives, particularly those of a morally-relevant nature, that might also be influencing CEOs’ decisions. To address this limitation, we advance moral cleansing as an alternative explanation for how and (...) why CEOs lead their firms to respond to stakeholder demands following the firm’s misconduct and, in turn, whether they can successfully restore their firm’s legitimacy. In the context of firm misconduct, moral cleansing motives reflect CEOs’ desire to restore their threatened moral self-image resulting from the misconduct. We theorize that a CEO’s moral cleansing motives increase the likelihood that their firm will engage in a series of reparative responses that can restore the firm’s legitimacy (i.e., discovery, explanation, penance, and rehabilitation). In addition, we explicate the unique implications of CEOs’ moral cleansing in a post-misconduct context by theorizing how such motives may simultaneously improve one form of their firms’ legitimacy while hindering another. Specifically, we theorize that CEOs’ moral cleansing motives increase (decreases) the authenticity (strategic cognition) of their firm responses, which strengthens (weakens) the effectiveness of those responses on the firms’ ability to restore its moral (pragmatic) legitimacy with stakeholders. We conclude with a discussion of the implications of this work. (shrink)

BackgroundFollowing the SARS pandemic, jurisdictions around the world began developing ethical resource allocation frameworks for future pandemics—one such framework was developed by Thompson and colleagues. While this framework offers a solid backbone upon which decision-makers can rest assured that their work is driven by rigorous ethical processes and principles, it fails to take into account the nuanced experiences and interests of children and youth (i.e., young people) in a pandemic context. The current COVID-19 pandemic offers an opportunity to re-examine this (...) framework from young people’s perspectives, informed by advances in childhood ethics and children’s rights.Main bodyIn this paper, we revisit the Thompson et al. framework and propose adaptations to the ethical processes and values outlined therein. This work is informed by expertise in clinical ethics and literature related to impacts of COVID-19 and other pandemics on the health and well-being of children around the world, though with particular attention to Canada. During the processes of drafting this work, stakeholders were consulted—aligned with the approach used by Thompson and colleagues—to validate the interpretations provided. We also propose a new principle, namely practicability, to indicate the complex balance between what is possible and what is convenient that is required in ethically sound decisions in the context of services affecting young people. We outline and discuss the strengths and limitations of our work and indicate next steps for scholars in the areas of childhood studies and child health.ConclusionEfforts to ensure frameworks are truly child-inclusive should be the status-quo, so pandemic impacts and policy implications can be considered in advance of emergency preparedness contexts. (shrink)

The aim of this article is to analyse the contemporary ‘futility discourse’ from a constructivist perspective. I will argue that bioethics discourse typically disregards the con text from which controversies emerge and the processes that inform and constrain such discourse. Constructivists have argued that scientific knowledge is expressive of the dominant paradigm within which a scientific community is working. I will outline an analysis of ‘medical futility’ as a construction of biomedical and bioethical communities (and their respective paradigms). I will (...) trace the emergence and utilization of futility in the literature. My analysis of the context (i.e. the historical circumstances, the particular actors involved) within which the futility discourse emerged suggests that medical futility was constructed, in part, as a means of enhancing physician domination of a context wherein medical authority was threatened. The actors in this debate express widely divergent frameworks of ‘the good’, arguing from distinctive representations of moral agency. At times, this controversy has been argued from incommensurate moral horizons wherein the discussants debate incomparable problems. This discussion is related to a study of the ‘practice’ of futility in the clinical context. Further studies on the construction of bioethical problems are a necessary condition for supporting the truth claims of bioethical arguments. (shrink)

The International Conference "Tra rito e mito: il Carnevale nella cultura europea" was held online on the 16th and 17th of November 2020. We present twenty-two contributions coming from various fields of the Humanities and written in Italian, French, and German. This proceedings’ foreword traces back the thread that links these essays one with another, i.e., carnivalesque imagery between ritual and mythological dimensions. Moreover, this introduction provides a key to an interpretation of Carnival as a founding instance, both regenerative (...) and conservative, of the European identity. Recovering this instance today, in the midst of a pandemic, responds to the problem of its partial loss in contemporary society, in the hope to rebuild a “free and familiar contact among people”. (shrink)

Theoretical and empirical research in bioethics frequently focuses on ethical dilemmas or problems. This paper draws on anthropological and phenomenological sources to develop an alternative framework for bioethical enquiry that allows examination of a broader range of how the moral is experienced in the everyday lives of individuals and groups. Our account of moral experience is subjective and hermeneutic. We define moral experience as “Encompassing a person's sense that values that he or she deem important are being realised or thwarted (...) in everyday life. This includes a person's interpretations of a lived encounter, or a set of lived encounters, that fall on spectrums of right-wrong, good-bad or just-unjust”. In our conceptualisation, moral experience is not limited to situations that are heavily freighted with ethically-troubling ramifications or are sources of debate and disagreement. Important aspects of moral experience are played out in mundane and everyday settings. Moral experience provides a research framework, the scope of which extends beyond the evaluation of ethical dilemmas, processes of moral justification and decision-making, and moral distress. This broad research focus is consistent with views expressed by commentators within and beyond bioethics who have called for deeper and more sustained attention in bioethics scholarship to a wider set of concerns, experiences and issues that better captures what is ethically at stake for individuals and communities. In this paper we present our conceptualisation of moral experience, articulate its epistemological and ontological foundations and discuss opportunities for empirical bioethics research using this framework. (shrink)

The aim of this article is to explore the complex forms of knowledge involved in diagnostic and interventional decision making by comparing the processes in medicine and nursing, including nurse practitioners. Many authors assert that the practice of clinical decision making involves the application of theoretical knowledge (acquired in the classroom and textbooks) as well as research evidence, upon concrete particular cases. This approach draws on various universal principles and algorithms to facilitate the task. On the other hand, others argue (...) that this involves an intuitive form of judgement that is difficult to teach, one that is acquired principally through experience. In an exploration of these issues, this article consists of three sections. A clarification of terms commonly used when discussing decision making is provided in the first section. In the second section, an epistemological analysis of decision making is presented by examining several perspectives and comparing them for their use in the nursing and medical literature. Bunge's epistemological framework for decision making (based on scientific realism) is explored for its fit with the aims of medicine and nursing. The final section presents a discussion of knowledge utilization and decision making as it relates to the implications for the education and ongoing development of nurse practitioners. It is concluded that Donald Schön's conception of reflective practice best characterizes the skilful conduct of clinical decision making. (shrink)

Although dual-process or divided-mind models of self-control dominate the literature, they suffer from empirical and conceptual challenges. We propose an alternative approach, suggesting that self-control can be characterized by a fragmented part versus integrated whole dynamic. Whereas responses to events derived from fragmented parts of the mind undermine self-control, responses to events derived from integrated wholes enhance self-control. We review empirical evidence from psychology and related disciplines that support this model. We, moreover, discuss the implications of this work for psychology, (...) neuroscience, economics, and philosophy. In particular, we highlight how this model addresses many of the conceptual and empirical short-comings of divided-mind models. We suggest that understanding self-control as the interplay between fragmented parts versus integrated wholes, moreover, provides novel insights and testable new hypotheses. (shrink)

Background:A growing number of frameworks for the practice of clinical ethics are described in the literature. Among these, hermeneutical frameworks have helped highlight the interpretive and contextual nature of clinical ethics practice.Objectives:The aim of this article is to further advance this body of work by drawing on the ideas of Charles Taylor, a leading hermeneutical philosopher.Design/Findings:A Hermeneutical Rapprochement Framework is presented for clinical ethics practice, based on Taylor’s hermeneutical “retrieval” and “rapprochement.” This builds on existing hermeneutical approaches for the practice (...) of clinical ethics by articulating a framework with interpretive and reconciliatory scope that extends beyond the presenting “local” context. A Hermeneutical Rapprochement Framework considers broader socio-historical horizons and imaginaries grounded on Taylor’s expansive work in epistemological, ontological, political, and moral philosophy.Discussion:The framework is discussed in terms of how it can be operationalized for clinical practice as well as normative development. Implications for the educational preparation of clinical ethicists are also discussed. Although this work is directly relevant for clinical ethicists, it can also help inform the ethical practice of all clinicians. (shrink)

In this article, the nursing health history is revisited with a hermeneutic lens to uncover means by which this tool can better serve nursing practice. It is argued that further distanciation from the developmental and medical model is necessary to accurately uncover health and history in the nurse–client encounter. Based on the works of prominent hermeneutic philosophers, such as Heidegger, Gadamer, Merleau‐Ponty, Ricoeur, and Taylor, four orientations to health history and nursing are explored: orientation to caring, orientation to narrative, orientation (...) to time, and orientation to the body. The nursing health history is used as a vehicle for illuminating the usefulness of a hermeneutic perspective in everyday nursing practice. This article reveals views of health, history, and health history that are already known to nurses and the nursing milieu but are concealed by more dominant outlooks. The hermeneutical perspective presented in this article can help to reveal the important dimensions of everyday nursing practice and foster a richer attunement with the complex health experiences of individuals. (shrink)

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When professionals assess the (...) resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition. (shrink)

In this article I argue for an interpretive approach to bioethics with critically ill children. I begin by highlighting the dominant Anglo-American bioethical framework that defines standards for ethical care in critically ill children and then outline a critique of this framework. Drawing predominantly on the ideas of Charles Taylor, Michael Walzer and Richard Zaner, I call for a reconception of bioethics and propose an interpretive ‘thick’ framework that is centred on culture and context. Finally, I illustrate this interpretive approach (...) through a comparative study of two cases in pediatric intensive care: the narratives of Marc and Larry. These case studies reveal that ethical dilemmas in pediatric critical care can be traced to relational tensions over respect, trust and power rooted in the disparity of moral horizons among the persons involved. (shrink)

This analysis presents an epistemological and moral examination of suffering. It addresses the specific questions: (1) What is suffering? (2) Can one's suffering be assessed by another? and (3) What is the moral significance of suffering? The epistemological analysis is orientated by Peter Hacker's framework for the investigation of emotions, demonstrating that suffering is an emotion. This leads to a discussion of whether suffering is a phenomenon that can be evaluated objectively by another person who is not experiencing the suffering, (...) questioning the validity of some decisional models for limiting life-sustaining therapies with the aim of preventing suffering. This analysis highlights that understandings of suffering are value laden. It is conventionally implied that suffering is `bad' and that it should be eliminated. Suffering is commonly regarded as a moral wrong that needs to be made right by health care. This article concludes with a recommendation for a paradigm shift in how suffering can be better understood, through the practice of empathic attunement. (shrink)

Hermeneutics, also referred to as interpretive phenomenology, has led to important contributions to nursing research. The philosophy of Charles Taylor has been a major source in the development of contemporary hermeneutics, through his ontological and epistemological articulations of the human sciences. The aim of this paper is to demonstrate that Taylor's ideas can further enrich hermeneutic inquiry in nursing research, particularly for investigations of ethical concerns. The paper begins with an outline of Taylor's hermeneutical framework, followed by a review of (...) his key ideas relevant for ethics research. The paper ends with a discussion of my empirical research with critically ill children in Canada and France in relation to Taylor's ideas, chiefly Social Imaginaries. I argue that Taylor's hermeneutics provides a substantive moral framework as well as a methodology for examining ethical concerns. (shrink)

A crucial philosophical problem of social robots is how much they perform a kind of sociality in interacting with humans. Scholarship diverges between those who sustain that humans and social robots cannot by default have social interactions and those who argue for the possibility of an asymmetric sociality. Against this dichotomy, we argue in this paper for a holistic approach called “Δ phenomenology” of HSRI. In the first part of the paper, we will analyse the semantics of an HSRI. This (...) is what leads a human being to assign or receive a meaning of sociality by interacting with a social robot. Hence, we will question the ontological structure underlying HSRIs, suggesting that HSRIs may lead to a peculiar kind of user alienation. By combining all these variables, we will formulate some final recommendations for an ethics of social robots. (shrink)

Applying value relevance analysis to a sample of European banks, we test the following: (i) the direct effects of the sustainability report on stock price; (ii) whether the report modifies the value relevance of financial accounting variables (indirect effects); and (iii) whether the value relevance of sustainability reports varies across countries. Results show that investors appreciate the additional and complementary disclosure provided by the sustainability report and that this disclosure produces a positive effect on stock prices. Estimates of the indirect (...) effects demonstrate that it has a negative influence on book value per share, whereas the effect on earnings per share is not significant. Cross-country analysis shows that the value relevance of the sustainability report varies across European countries, consistent with the hypothesis that the value relevance of the sustainability report is likely to be influenced by different institutional contexts. (shrink)

Within his earliest contributions to the human sciences, Charles Taylor challenged dominant behavioral views by advancing a hermeneutical conception of human agency. For Taylor, persons continually...

Accepted standards of parental decisional autonomy and child best interests do not address adequately the complex moral problems involved in the care of critically ill children. A growing body of moral discourse is calling for the recognition of `tragedy' in selected human problems. A tragic dilemma is an irresolvable dilemma with forced terrible alternatives, where even the virtuous agent inescapably emerges with `dirty hands'. The shift in moral framework described here recognizes that the form of conduct called for by tragic (...) dilemmas is the practice of phronesis. The phronetic agent has acquired a capacity to discern good agency in tragic circumstances. This discernment is practiced through the artful creation of moral narratives: stories that convey that which is morally meaningful in a particular situation; that is, stories that are `meaning making'. The phronetic agent addresses tragic dilemmas involving children as a narrator of contextualized temporal embodied human (counter)stories. (shrink)

This article provides an introduction to the articles in this theme issue. This collection examines epistemological, ontological, moral and political questions in medicine in light of the philosophical ideas of Charles Taylor. A synthesis of Taylor's relevant work is presented. Taylor has argued for a conception of the human sciences that regards human life as meaningful–deriving meaning from surrounding horizons of significance. An overview of the interdisciplinary articles in this issue is presented. This collection advances our thinking in the philosophy (...) of medicine as well as the philosophy of Charles Taylor. (shrink)

BackgroundSerious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs.Research aimsTo explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression.Research designA focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and (...) practice-based research (art-making) with 10 children with OI; and local documents.Participants and research contextThe study was conducted at a pediatric, orthopedic hospital.Ethical considerationsThis study was approved by McGill University Institutional Review Board.Findings/resultsChildren expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children’s voice and participation in health-related discussions.ConclusionsHealthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children’s actual and desired participation in care and promote positive moral experiences. (shrink)

This article reviews empirical evidence and ethical norms in cross-linguistic nursing. Empirical evidence highlights that linguistic barriers between nurses and patients can perpetuate discrimination and compromise nursing care. There are significant organizational and relational challenges involved in ensuring adequate use of interpreters by nurses. Some evidence suggests that linguistic barriers are particularly problematic for nurses when compared with physicians. A comparative analysis of nursing ethical norms for cross-linguistic nursing was conducted using the codes of ethics of the American Nurses Association, (...) the Canadian Nurses Association, and the International Council of Nurses. Five principal ethical norms for cross-linguistic nursing were identified: (1) respect for the patient as a unique person; (2) respect for the patient’s right to self-determination; (3) respect for patient privacy and confidentiality; (4) responsibility for one’s own competence, judgment, and action; and (5) responsibility to promote action better to meet the needs of patients, families, and groups. (shrink)

Purpose The purpose of this paper is to present the conceptual model of an innovative methodology (SAT) to assess the social acceptance of technology, especially focusing on artificial intelligence (AI)-based technology. -/- Design/methodology/approach After a review of the literature, this paper presents the main lines by which SAT stands out from current methods, namely, a four-bubble approach and a mix of qualitative and quantitative techniques that offer assessments that look at technology as a socio-technical system. Each bubble determines the social (...) variability of a cluster of values: User-Experience Acceptance, Social Disruptiveness, Value Impact and Trust. -/- Findings The methodology is still in development, requiring further developments, specifications and validation. Accordingly, the findings of this paper refer to the realm of the research discussion, that is, highlighting the importance of preventively assessing and forecasting the acceptance of technology and building the best design strategies to boost sustainable and ethical technology adoption. -/- Social implications Once SAT method will be validated, it could constitute a useful tool, with societal implications, for helping users, markets and institutions to appraise and determine the co-implications of technology and socio-cultural contexts. -/- Originality/value New AI applications flood today’s users and markets, often without a clear understanding of risks and impacts. In the European context, regulations (EU AI Act) and rules (EU Ethics Guidelines for Trustworthy) try to fill this normative gap. The SAT method seeks to integrate the risk-based assessment of AI with an assessment of the perceptive-psychological and socio-behavioural aspects of its social acceptability. (shrink)

The aim of this article is to highlight the under-recognized merits of clinical ethics committees (CECs), to help ensure that the development of roles for clinical ethics consultants do not unwittingly compromise the valuable contributions that CECs can continue to provide. I argue that CECs can offer distinctive contributions to the clinical ethics consultation process that can complement and enrich the input provided by a clinical ethics consultant. These distinctions and complementarities should be further examined and developed. This will help (...) to optimize the synergistic contributions that CECs and clinical ethics consultants can make to promote the ethical treatment of patients and their families. (shrink)

Over the last decade, humans have produced each year as much data as were produced throughout the entire history of humankind. These data, in quantities that exceed current analytical capabilities, have been described as “the new oil,” an incomparable source of value. This is true for healthcare, as well. Conducting analyses of large, diverse, medical datasets promises the detection of previously unnoticed clinical correlations and new diagnostic or even therapeutic possibilities. However, using Big Data poses several problems, especially in terms (...) of representing the uniqueness of each patient and expressing the differences between individuals, primarily gender and sex differences. The first two sections of the paper provide a definition of “Big Data” and illustrate the uses of Big Data in medicine. Subsequently, the paper explores the struggle to represent exhaustively the uniqueness of the patient through Big Data is highlighted prior to a deeper investigation of the digital representation of gender in personalized medicine. The final part of the paper put forward a series of recommendations for better approaching the complexity of gender in medical and clinical research involving Big Data for the creation or enhancement of personalized medicine services. (shrink)

The modern West has vigorously sought to overcome death, or at the very least minimize the suffering that it entails. Whereas the former has been predominantly pursued through modern scientific medicine, the minimization of the adversity of death and dying has been sought through ‘death technologies’. This technologization of death is analyzed in light of Martin Heidegger’s phenomenological philosophy. The analysis begins with an outline of the fundamental tenets of Heidegger’s ‘philosophy of Being’. In turn, his philosophical framework is utilized (...) to highlight the manner in which the technologization of dying serves to conceal the central existential questions about being and finitude that dying gives rise to. The paper concludes with a discussion of how Heidegger’s work can inspire a more authentic stance toward dying. Leo Tolstoy’s The Death of Ivan Ilych is referred to in order to illustrate Heidegger’s construal of this existential struggle toward dying. (shrink)

Nursing scholars have called for nursing approaches with children that ensure the promotion of their childhood, contesting dominant adult-based approaches that are adapted for practice with children. Although the nursing literature includes many important advances in the promotion of child-centered approaches, there are still significant gaps in fully recognizing the complexities of childhood within nursing. Within this paper, I (a) outline some key advances in nursing approaches with children, sometimes referred to as “Children's Nursing” (shifting away from “Pediatric Nursing” conceptions (...) that may be focused more on diseases than childhood); (b) highlight key gaps in current conceptions of Children's Nursing, namely the inadequate integration of work from the interdisciplinary field of Childhood Studies which challenges dominant age-based developmental models which discount children's voices and experiences as “immature”; and (c) propose a Childhood Ethics-based framework that bridges advances in Children's Nursing with those within Childhood Studies, which I refer to as the VOICE Children's Nursing Framework. The latter is rooted in the recognition of (a) children as active agents with capacities and interests in participating in discussions and decisions that affect them, and (b) best interests as the foundational basis for determining the nursing care required by a child which should be defined in an individualized manner, informed by a child's expressed aspirations and concerns. This Framework integrates biological, relational, and ethical dimensions of children's wellbeing and draws on hermeneutic approaches for eliciting and interpreting children's agential expressions, which involves continuous part/whole shifting to meticulously discern what is meaningful within a situation. The Framework is operationalized for clinical practice through the use of orienting questions, which is demonstrated through discussion of a clinical exemplar. The paper closes with proposed future directions for Children's Nursing development in practice, education, and research. (shrink)

Over the last decade, humans have produced each year as much data as were produced throughout the entire history of humankind. These data, in quantities that exceed current analytical capabilities, have been described as “the new oil,” an incomparable source of value. This is true for healthcare, as well. Conducting analyses of large, diverse, medical datasets promises the detection of previously unnoticed clinical correlations and new diagnostic or even therapeutic possibilities. However, using Big Data poses several problems, especially in terms (...) of representing the uniqueness of each patient and expressing the differences between individuals, primarily gender and sex differences. The first two sections of the paper provide a definition of “Big Data” and illustrate the uses of Big Data in medicine. Subsequently, the paper explores the struggle to represent exhaustively the uniqueness of the patient through Big Data is highlighted prior to a deeper investigation of the digital representation of gender in personalized medicine. The final part of the paper put forward a series of recommendations for better approaching the complexity of gender in medical and clinical research involving Big Data for the creation or enhancement of personalized medicine services. (shrink)

Qualitative inquiry is increasingly used to foster change in health policy and practice. Research ethics committees often misunderstand qualitative inquiry, assuming its design can be judged by criteria of quantitative science. Traditional health research uses scientific realist standards as a means-to-an-end, answering the question “So what?” to support the advancement of practice and policy. In contrast, qualitative inquiry often draws on constructivist paradigms, generating knowledge either as an end-in-itself or as a means to foster change. When reviewers inappropriately judge qualitative (...) inquiry, it restricts the ways health phenomena can be understood. Qualitative inquiry is necessary because it enables an understanding not possible within scientific explanation. When such research illuminates, it can also shed light onto the “So what?” In order to ensure an appraisal of qualitative inquiry congruent with its paradigmatic premises, we suggest the “Illumination Test,” met when findings foster rich understanding of phenomena, resulting in a reflective “aha!”. (shrink)

Background:Nurses and nursing students appear vulnerable to moral distress when faced with ethical dilemmas or decision-making in clinical practice. As a result, they may experience professional dissatisfaction and their relationships with patients, families, and colleagues may be compromised. The impact of moral distress may manifest as anger, feelings of guilt and frustration, a desire to give up the profession, loss of self-esteem, depression, and anxiety.Objectives:The purpose of this review was to describe how dilemmas and environmental, relational, and organizational factors contribute (...) to moral distress in undergraduate student nurses during their clinical experience and professional education.Research design:The research design was a systematic literature review.Method:The search produced a total of 157 articles published between 2004 and 2014. These were screened with the assessment sheet designed by Hawker and colleagues. Four articles matched the search criteria (one quantitative study and three qualitative), and these were separately read and analyzed by the researchers. The process of review and analysis of the data was supervised by a colleague experienced in moral distress who provided an independent quality check.Ethical consideration:Since this was a systematic review, no ethical approval was required.Findings:From the analysis, it emerged that inequalities and healthcare disparities, the relationship with the mentor, and students’ individual characteristics can all impact negatively on the decisions taken and the nursing care provided, generating moral distress. All these factors condition both the clinical experience and learning process, in addition to the professional development and the possible care choices of future nurses.Conclusion:Few studies dealt with moral distress in the setting of nurse education, and there is a knowledge gap related to this phenomenon. The results of this review underline the need for further research regarding interventions that can minimize moral distress in undergraduate nursing students. (shrink)

Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with a participatory (...) approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

Medical assistance in dying legislation in Canada followed much deliberation after the Supreme Court of Canada’s ruling in Carter v. Canada. Included in this deliberation was the Special Joint Committee on Physician Assisted Dying’s recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children’s voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the (...) possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children’s voices could be mobilised in the life or death context of MAID. We conclude that children’s voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice. (shrink)

Durkheim écrit ce livre avec un but double : d'abord il voulait expliquer ce qui crée une société, ce qui la tient ensemble ; ensuite il voulait éclaircir l'influence qu'a la société sur la pensée logique. Pour Durkheim, la religion est la clé utilisée pour déverrouiller ces deux problématiques.Dans ce livre, Durkheim argumente que les représentations religieuses sont en fait des représentations collectives : l'essence du religieux ne peut être que le sacré. Il est une caractéristique qui se trouve universellement (...) dans toutes les religions. Le sacré, être collectif et impersonnel, représente ainsi la société elle-même. Ensuite il argumente que la société a un impact majeur dans la genèse de la pensée logique. C'est la société qui fournit à l'individu les catégories (le temps, l'espace, le nombre etc.) et les concepts nécessaires pour la pensée logique. (shrink)