Nurses find themselves in a unique position - between patient and physicians, and in close proximity to the patient. Moral sensitivity can help nurses to cope with the daily turmoil of demands and opinions while delivering care in concordance with the value system of the patient. This article aims to reconsider the concept of moral sensitivity by discussing the function of emotions in morality. We turn to the ideas of historic and contemporary authors on the function of emotions in morality (...) to expand our understanding of moral sensitivity. Ancient philosophers and contemporary psychologists uphold different strategies on the orientation of morality being (a) personal growth or (b) community living, and the primordial function of (c) reason and (d) emotions in the creation of judgements about good and bad. The theoretical discussion on the function of emotions in morality shows that by focusing on reason alone, one leaves out an essential part of morality. The concept of moral sensitivity should (1) include an initial judgment of good and bad based on emotions, (2) hold the ability to reflect on the initial judgement and the associated emotions, (3) include the ability to understand other stakeholders' perspectives based on the ideal-types and (4) include a personal decision on the right course of action. (shrink)

Synthetic biology is an emerging technology that asks for inclusive reflection on how people frame the field. To unravel how we can facilitate such reflection, this study evaluates the Frame Reflection Lab. Building upon playfulness design principles, the FRL comprises a workshop with video-narratives and co-creative group exercises. We studied how the FRL facilitated frame reflection by organizing workshops with various student groups. Analysis of 12 group conversations and 158 mini-exit surveys yielded patterns in first-order reflection as well as patterns (...) in second-order reflection. Also patterns in participants’ framing of synthetic biology could be induced; participants’ viewpoints converged to some extent, yet with openness to individual viewpoint differences. Although the FRL method fortified the reflection processes of participants, the narratives and the workshop’s flexible format could inhibit the reflection too. Therefore, we advise designers of future frame reflection methods to apply stronger conversational facilitation and narratives of slightly mysterious yet identifiable narrators, in case e.g. video-narratives are created and used to scaffold the reflection process. Nevertheless, we argue that the use of a playful frame reflection method like the FRL could function well as a step to precede more application-specific deliberation or decision-making on synthetic biology and as a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further responsible development of the emerging field. (shrink)

This paper explores and rehabilitates the value of decisional privacy as a conceptual tool, complementary to informational privacy, for critiquing personalized choice architectures employed by self-tracking technologies. Self-tracking technologies are promoted and used as a means to self-improvement. Based on large aggregates of personal data and the data of other users, self-tracking technologies offer personalized feedback that nudges the user into behavioral change. The real-time personalization of choice architectures requires continuous surveillance and is a very powerful technology, recently coined as (...) “hypernudging.” While users celebrate the increased personalization of their coaching devices, “hypernudging” technologies raise concerns about manipulation. This paper addresses that intuition by claiming that decisional privacy is at stake. It thus counters the trend to solely focus on informational privacy when evaluating information and communication technologies. It proposes that decisional privacy and informational privacy are often part of a mutually reinforcing dynamic. Hypernudging is used as a key example to illustrate that the two dimensions should not be treated separately. Hypernudging self-tracking technologies compromise autonomy because they violate informational and decisional privacy. In order to effectively judge whether technologies that use hypernudges empower users, we need both privacy dimensions as conceptual tools. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in the context (...) of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)

This paper critically engages with new self-tracking technologies. In particular, it focuses on a conceptual tension between the idea that disclosing personal information increases one’s autonomy and the idea that informational privacy is a condition for autonomous personhood. I argue that while self-tracking may sometimes prove to be an adequate method to shed light on particular aspects of oneself and can be used to strengthen one’s autonomy, self-tracking technologies often cancel out these benefits by exposing too much about oneself to (...) an unspecified audience, thus undermining the informational privacy boundaries necessary for living an autonomous life. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system–paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide ‘high-value, cost-conscious care’ (HVCCC), which proponents believe is the future of sustainable (...) medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors’ professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients–redefining the currency of value from monetary costs to a patient’s quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation. (shrink)

Background The European Union aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury, aiming to inform and stimulate initiatives to improve efficiency. Methods We reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury. (...) Documents included detailed information on IRB procedures and the duration from IRB submission until approval. They were translated and analyzed to determine the level of harmonization of IRB procedures within Europe. Results From 18 countries, 66 centers provided the requested documents. The primary IRB review was conducted centrally or locally and primary IRB approval was obtained after one, two or three review rounds with a median duration of respectively 50 and 98 days until primary IRB approval. Additional IRB approval was required in 55% of countries and could increase duration to 535 days. Total duration from submission until required IRB approval was obtained was 114 days and appeared to be shorter after submission to local IRBs compared to central IRBs. Conclusion We found variation in IRB procedures between and within European countries. There were differences in submission and approval requirements, number of review rounds and total duration. Research collaborations could benefit from the implementation of more uniform legislation and regulation while acknowledging local cultural habits and moral values between countries. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

This research statement presents a roadmap for the ethical evaluation of contact tracing apps. Assuming the possible development of an effective and secure contact tracing app, this roadmap explores three ethical concerns—privacy, data monopolists and coercion- based on three scenarios. The first scenario envisions and critically evaluates an app that is built on the conceptualization of privacy as anonymity and a mere individual right rather than a social value. The second scenario sketches and critically discusses an app that adequately addresses (...) privacy concerns but is facilitated by data monopolists such as Google and Apple. The final scenario discusses the coerced installation and use of a privacy-friendly, independently developed contact tracing app. The main worry is coercion through societal exclusion and limited societal participation. The statement concludes with three suggestions for designing an ethical contact tracing app and a research agenda. (shrink)

Some bioethicists engage with empirical work on stakeholders’ values, attitudes, and experiences as a basis for theorizing ethics in the context of healthcare. Related to this empirical turn, a deb...

Women intimately interact with various medical technologies and prosthetic artifacts in the context of breast cancer. While extensive work has been done on the agency of technological artifacts and how they affect users’ perceptions and experiences, the agency of users is largely taken for granted hitherto. In this article, we explore the agency of four women who engage with breast cancer technologies and artifacts by analyzing their narrative accounts of such engagements. This empirical discussion is framed within the tradition of (...) science and technology studies, philosophy of technological mediation and phenomenology of embodied agency as ‘I can/not’. This approach leads to the conclusions that women’s technologically mediated agencies range from being restricted to extended, take place on different bodily levels, within complex temporal structures, and are determined by certain socio-cultural contexts. Furthermore, it reveals that such agency shaping does not imply a one-way conditioning relationship between technologies and users, but rather involves a reciprocal relationship in which both subject and object are co-constituted. We therefore suggest that the ‘material turn’ in philosophy of technology also needs to take into account technologically mediated, material human beings in order to gain a better understanding of human existence. (shrink)

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide. This study aimed to explore the content of this pressure as experienced by general practitioners. We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: emotional blackmail, control and direction by others, doubts about fulfilling the (...) criteria, counterpressure by patient’s relatives, time pressure around referred patients and organisational pressure. We conclude that the pressure can be attributable to the patient–physician relationship and/or the relationship between the physician and the patient’s relative, the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account. (shrink)

The present study extends the meaningful work and ethics literature by comparing three ethics-related antecedents. The second contribution of this paper is that in using a multi-dimensional MFW construct we offer a more fine-tuned understanding of the impact of ethical antecedents on different dimensions of MFW, such as expressing full potential and integrity with self. Using an international data set from 879 employees and structural equation modelling, we confirmed an updated seven-dimension Comprehensive Meaningful Work Scale. The structural model found that (...) fairness, responsible leadership and worthy work are all significant and positively related to the majority of meaningfulness dimensions. However, different antecedents are related to different dimensions of MFW, showing that a complex and multi-level combination of ethics-related practices are required to cultivate MFW. All relationships were in the expected positive direction except responsible leadership, which was negatively related to the MFW dimension of integrity with self. Across the seven dimensions of MFW, only the dimension ‘Service to Others’ was uniformly not predicted by any antecedent. However, all three antecedents significantly related to important dimensions of MFW not usually measured in the ethics literature, such as ‘Unity with Others’ and ‘Expressing Full Potential’. In addition, we conducted dominance analysis to test the relative importance of the three antecedent across the MFW dimensions, and found that worthy work is the most dominant antecedent, although all three antecedents are the most dominant for at least one MFW dimension—further highlighting the importance of exploring MFW as a multi-dimensional construct. We discuss the implications for MFW theory and practice. (shrink)

The present study extends the meaningful work and ethics literature by comparing three ethics-related antecedents. The second contribution of this paper is that in using a multi-dimensional MFW construct we offer a more fine-tuned understanding of the impact of ethical antecedents on different dimensions of MFW, such as expressing full potential and integrity with self. Using an international data set from 879 employees and structural equation modelling, we confirmed an updated seven-dimension Comprehensive Meaningful Work Scale. The structural model found that (...) fairness, responsible leadership and worthy work are all significant and positively related to the majority of meaningfulness dimensions. However, different antecedents are related to different dimensions of MFW, showing that a complex and multi-level combination of ethics-related practices are required to cultivate MFW. All relationships were in the expected positive direction except responsible leadership, which was negatively related to the MFW dimension of integrity with self. Across the seven dimensions of MFW, only the dimension ‘Service to Others’ was uniformly not predicted by any antecedent. However, all three antecedents significantly related to important dimensions of MFW not usually measured in the ethics literature, such as ‘Unity with Others’ and ‘Expressing Full Potential’. In addition, we conducted dominance analysis to test the relative importance of the three antecedent across the MFW dimensions, and found that worthy work is the most dominant antecedent, although all three antecedents are the most dominant for at least one MFW dimension—further highlighting the importance of exploring MFW as a multi-dimensional construct. We discuss the implications for MFW theory and practice. (shrink)

This paper takes as its point of departure the recent publication of Heidegger’s lecture course Basic Concepts of Aristotelian Philosophy and focuses upon Heidegger’s reading of Aristotle’s concept of pathos. Through a comparative analysis of Aristotle’s concept of pathos and Heidegger’s inventive reading of this concept, I aim to show the strengths and weaknesses of Heidegger’s reading. It is my thesis that Heidegger’s account is extremely rich and innovative as he frees up pathos from the narrow confines of psychology and (...) incidental change and places it squarely into the center of the fundamental changes affecting a living being’s existence; simultaneously, however, Heidegger sometimes overstates the ties that pathos has with other concepts such as ousia and logos and highlights exceptional rather than common meanings of pathos, thereby risking the charge of being unfaithful to Aristotle’s text. (shrink)

The interest in meaningful work has significantly increased over the last two decades. Much of the associated managerial research has focused on researching ways to 'provide and manage meaning' through leadership or organizational culture. This stands in sharp contrast with the literature of the humanities which suggests that meaningfulness does not need to be provided, as the distinct feature of a human being is that he or she has an intrinsic 'will to meaning'. The research that has been done based (...) on the humanistic paradigm has been quite fragmented. This article aims to address these gaps through an action research project that actively involved participants in the process of affirming and uncovering the meaningfulness of their work. Our findings contribute to current organizational scholarship and practice as they enable scholars to clearly distinguish 'meaningful work' from 'the management of meaning', bring together the various sources of meaningful work in one framework and show their relationship with each other, clearly show the importance of engaging with both the inspiration towards the ideal as well as the often less than perfect self and the organizational reality in which meaning gets expressed and contribute to our understanding of how to engage individuals in conversations about meaningful work that are not prescriptive or exclusive, but that also show where meanings are commonly held. (shrink)

Starting from first person experience, I argue that early miscarriage may invoke a sense of loss that is enigmatic and ambiguous, often times complicated by the fact that the topic of miscarriage is culturally silenced. Understanding the frequency of such occurrences of early pregnancy loss (in terms of the “miscarriage iceberg”) adds to the existential need to conceptualize such losses as they bleed into life at its very emergence. The prevalent cultural discourse on loss, even when it deals with ambiguity, (...) is focused upon individuation and personhood, which may complicate the grieving process in the case of early pregnancy loss.In searching for alternative epistemologies to address early pregnancy loss and its consequent grief, I propose the following conceptual pathways to elucidate the nature of this loss. First, early pregnancy loss may be understood in terms of the dissipation of a pregnant constellation, thereby putting less emphasis on losing a “being” but rather a sense of participation. This clarifies the kind of loss involved but does not yet completely explain what kind of relationality is lost. Secondly, the grief involved in early pregnancy loss benefits from the Freudian-inspired theories of Pauline Boss and Judith Butler, who emphasize that grief entails absence and presence (Boss, The myth of closure: ambiguous loss in a time of pandemic and change. W.W. Norton & Company, New York, 2021) as well as a deep loss of identity given the loss of relational ties that inform identity (Butler, Stud Gender Sexuality 4(1):9–37, 2003). This deepens the account of grief but does not precisely address the loss of mere emergent relationality. Thirdly, following Gilbert Simondon’s theory on ontogenesis (Simondon, The genesis of the individual. In Crary J, Kwinter S (eds) Incorporations. Zone Books, New York, 297–319, 1992), pregnancy loss involves losing a bridge to a pre-individual relationality, due to which the formerly pregnant body cannot easily leap “back” into former forms of individuation nor leap forward into a socially recognized altered collectivity. This account is able to clarify the kind of relational loss involved in early pregnancy loss. (shrink)

This paper examines the figure of silence in the works of Michel Serres and Simone Weil. It argues that, in the spirit of Serres and Weil, our time of crisis calls not for a short-term response, but for long-term engagement in a dialectics of silence: the dialogical movement between the silencing of institutions and the attentive silence of visionary insights. Such dialectics can revalidate the value of institutional silencing if based on solid rational proof while simultaneously showing the value of (...) visionary ideas that rightfully combat problematic institutional silencing. Especially in this current moment, in which science and scientific propositions are relentlessly questioned, there is a need to lean into silence so as to promote a productive dialogue that regains trust in proven scientific ideas and institutions while allowing visionary insights their place as well, provided that we are willing to test them. (shrink)

E-Co-Affectivity is a philosophical investigation of affectivity in various forms of life: photosynthesis and growth in plants, touch and trauma in bird feathers, the ontogenesis of human life through the placenta, the bare interface of human skin, and the porous materiality of soil. Combining biology, phenomenology, Ancient Greek thought, new materialisms, environmental philosophy, and affect studies, Marjolein Oele thinks through concrete, living places that show the receptive, responsive power of living beings to be affected and to affect. She focuses (...) on these localized interfaces to explain how affectivity emerges in places that are always evolving, creative, porous, and fluid. Every interface is material, but is also "more" than its current materiality in co-creating place, time, and being. After extensively describing the effects of the milieu and community within which each example of affectivity takes place, in the final chapter Oele adds a prescriptive, ethical lens that formulates a new epoch beyond the Anthropocene, one that is sensitive to the larger ecological, communal concerns at stake. (shrink)

Following Isabelle Stengers’s call that the anthropocene should make us feel and think differently, this paper focuses on the human task to shift its affective response. Since Stengers calls for a new “us” that seeks to participate in an entanglement, I propose to explore the material and ontogenetic functions of soil, and specifically soil pores, in reimagining a new form of e-co-affectivity. A new e-co-affective response would emphasize the usually hidden fluidity and diachronic time of pores, and, in doing so, (...) cultivate an epistemic and aesthetic sensitivity, deceleration, and percolation. (shrink)

This paper contends, following Plato and Broekman, that seeing images as images is crucial to theorizing medicine and that considering clinical pictures as images of images is a much-needed epistemic complement to the domineering view that sees clinical pictures as mirrors of disease. This does not only offer epistemic, but also ethical benefits to individual patients, especially in those cases where patients suffer from chronic, debilitating, and terminal illnesses and where medicine provides no, or limited, answers in terms of treatment, (...) intervention, and meaning. By creating room for a theory of clinical pictures that rightfully emphasizes its pictorial nature, patients and doctors alike may be encouraged to consider under what authorship, and with which epistemic tools, alternative, supplemental images may be produced to get at the existential reality of disease and suffering. Ultimately, this paper argues that the epistemic tools provided by aesthetics may offer such glimpses into the reality of disease and suffering, and I conclude by discussing a few artistic renditions of breast cancer to illustrate my point. (shrink)

This volume contains essays that offer both historical and contemporary views of nature, as seen through a hermeneutic, deconstructive, and phenomenological lens. It reaches back to Ancient Greek conceptions of physis in Homer and Empedocles, encompasses 13th century Zen master Dōgen, and extends to include 21st Century Continental Thought. By providing ontologies of nature from the perspective of the history of philosophy and of contemporary philosophy alike, the book shows that such perspectives need to be seen in dialogue with each (...) other in order to offer a deeper and more comprehensive philosophy of nature. The value of the historical accounts discussed lies in discerning the conceptual problems that contribute to the dominant thinking underpinning our ecological predicament, as well as in providing helpful resources for thinking innovatively through current problems, thus recasting the past to allow for a future yet to be imagined. The book also discusses contemporary continental thinkers who are more critically aware of the dominant anthropocentric and instrumental view of nature, and who provide substantial guidance for a sensible, innovative “ontology of nature” suited for an ecology of the future. Overall, the ontologies of nature discerned in this volume are not merely of theoretical interest, but strategically serve to suspend anthropocentrism and spark ethical and political reorientation in the context of our current ecological predicament. (shrink)

While having a breast reconstruction, women have certain expectations about their future breasted bodies. The aim of this paper is to describe and analyze these expectations in the process of reconstruction. By applying a qualitative, phenomenological study within a longitudinal research design, this paper acknowledges the temporarily complex, contextualized, embodied, and subjective nature of the phenomenon of expectations. The analysis identified expectations regarding three different aspects of women’s embodiment: their gazed body, their capable/practical body, and their felt body. After reconstruction, (...) these women try to reconfigure—adjust, level or retrospectively rewrite—their expectations. Further, some women face what apparently arrives totally unexpected, namely a strange feeling breast or a failed reconstruction. The development of these women’s expectations can be understood as an active, continuously evolving, difficult and sometimes impossible dynamic of expecting the surprise that is a breast reconstruction. Within this dynamic, women formulate and reconfigure—by definition—unrealistic expectations and validate and try to achieve unexpected futures. We suggest that medical professionals can facilitate this dynamic in various ways. (shrink)

By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. While ‘being there for you’, partners take care (...) of each other in mutually dependent ways. While ‘being reconnected to you’, partners relate to each other through intimacy and sexuality. While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

Women intimately interact with various medical technologies and prosthetic artifacts in the context of breast cancer. While extensive work has been done on the agency of technological artifacts and how they affect users’ perceptions and experiences, the agency of users is largely taken for granted hitherto. In this article, we explore the agency of four women who engage with breast cancer technologies and artifacts by analyzing their narrative accounts of such engagements. This empirical discussion is framed within the tradition of (...) science and technology studies, philosophy of technological mediation and phenomenology of embodied agency as ‘I can/not’. This approach leads to the conclusions that women’s technologically mediated agencies range from being restricted to extended, take place on different bodily levels, within complex temporal structures, and are determined by certain socio-cultural contexts. Furthermore, it reveals that such agency shaping does not imply a one-way conditioning relationship between technologies and users, but rather involves a reciprocal relationship in which both subject and object are co-constituted. We therefore suggest that the ‘material turn’ in philosophy of technology also needs to take into account technologically mediated, material human beings in order to gain a better understanding of human existence. (shrink)

BackgroundThe interpretation of clinical gait data in children with cerebral palsy (CP) is time-consuming, requires extensive expertise and often lacks transparency. Here we aimed to develop a set of look-up tables to support this process, linking typical gait features as present in CP to their potential underlying impairments.MethodsWe developed an initial core set of gait features and their potential underlying impairments based on biomechanical reasoning, literature and clinical experience. This core set was further specified through a Delphi process in a (...) multidisciplinary group of experts in gait analysis of children with CP and evaluated on 20 patient cases. The likelihood of the listed gait feature–impairment relationships was scored by the expert panel on a five-point scale.ResultsThe final core set included 120 relevant gait feature–impairment relations including likelihood scores. This set was presented in the form of look-up tables in both directions, i.e., sorted by gait features with potential underlying impairment, and sorted by impairments with potential related gait features. The average likelihood score for the relations was 3.5 ± 0.6 (range 2.1–4.6).ConclusionThe developed set of look-up tables linking gait features and impairments, can assist gait analysts and clinicians in standardized biomechanical reasoning, to support treatment decision-making for gait impairments in children with CP. (shrink)

Evaluating clinical ethics support services has been hailed as important research task. At the same time, there is considerable debate about how to evaluate CESS appropriately. The criticism, which has been aired, refers to normative as well as empirical aspects of evaluating CESS. In this paper, we argue that a first necessary step for progress is to better understand the intervention in CESS. Tools of complex intervention research methodology may provide relevant means in this respect. In a first step, we (...) introduce principles of “complex intervention research” and show how CESS fulfil the criteria of “complex interventions”. In a second step, we develop a generic “conceptual framework” for “ethics consultation on request” as standard for many forms of ethics consultation in clinical ethics practice. We apply this conceptual framework to the model of “bioethics mediation” to make explicit the specific structural and procedural elements of this form of ethics consultation on request. In a final step we conduct a comparative analysis of two different types of CESS, which have been subject to evaluation research: “proactive ethics consultation” and “moral case deliberation” and discuss implications for evaluating both types of CESS. To make explicit different premises of implemented CESS interventions by means of conceptual frameworks can inform the search for sound empirical evaluation of CESS. In addition, such work provides a starting point for further reflection about what it means to offer “good” CESS. (shrink)

Reality TV is immensely popular, and various shows in this media genre involve a storyline of infertility and infertility treatment. Feminists argue that normative and constructed realities about infertility and infertility treatment, like those in reality TV, are central to the emancipation of women. Such realities are able to steer viewers' perceptions of the world. This article examines the emancipatory significance of representations of women on 'infertility reality TV shows'. While the women in these shows all have 'abnormal' qualities, we (...) consider their portrayal as figurations of monstrosity. In the literature, monstrosity is understood as a way to challenge nonemancipatory norms by offering an alternative identity. Through a content analysis of seven reality TV shows, we identified four types of in/fertile monsters: the cyborg, the freak, the abject, and the childless. We show that these monsters are predominantly non-emancipatory as they all involve mechanisms of altering, excluding, or condemning infertility in relation to what is considered normal and acceptable womanhood. Therefore, at the end of this article, we make a plea for more diverse and emancipatory representations of infertile women in popular culture. (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways (...) in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)

Fiction television series are one of the few cultural expressions in which men’s infertility experiences are represented. Through a content analysis of twenty fiction series, this article describes and analyzes such representations. By drawing on Connell’s concept of hegemonic masculinity and Ricoeur’s understanding of paradoxical power structuring, four character types of infertile men are identified: (1) the virile in/fertile man, (2) the secretly non-/vasectomized man, (3) the intellectual eunuch, (4) the enslaving post-apocalyptic man. While these various dramatis persona outline different (...) ways of how infertile men relate to normative hegemonic masculinity, they all represent infertile men as diverging from shared masculine norms. This non-normativity initially excludes many represented men from hegemonic positions. Eventually, however, these men generally aspire to and succeed in reaffirming their hegemonic masculinity through coercive force towards women and other men, through instigating the precondition for any power structure – the shared will to live together as a community –, and/or by seeking and finding explicit recognition for their normativity and dominance. At the end of this paper, I will reflect on the potential harmful effect of these outlined representations of infertile men and make a plea for diversifying representations of infertile men in our culture. (shrink)

Background: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate (...) clinical ethics support services near the end of life. Methods: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. Ethical Considerations: Ethical approval is not needed as it is a systematic review of published literature. Results: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. Conclusion: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services. (shrink)

This paper develops insights from Foucault and Lyotard to examine the Darfur crisis and the transformative potential of spaces of alterity. We show that Foucault’s quest for an aesthetics of existence is an attempt to found an alternative form of ethics based on wakefulness, sensibility, and suspicion on the part of the subject. In the final part of the paper we link this idea to Lyotard’s sensibility of the sublime. We show how aesthetic sensibility can be transformed in a political (...) sensibility which bears witness to political injustices that result from the incommensurability of different genres of discourse. We illustrate this point using aesthetic representations of Darfur. (shrink)

This article gives an overview of the moral problems experienced and described by nurses working in a dialysis unit in the Netherlands. The nurses raised a wide variety of issues that they considered were moral problems, which were grouped into seven topics. A selection of cases are described, one of which is analysed using the Nijmegen method of ethical case deliberation. This method facilitates practical approaches to the different types of moral problems encountered. The argument is made that, owing to (...) their specific moral position and responsibility, nurses' contribution to ethical reflection in ward discussions should be valued more. All caregivers involved are indispensable in developing a basis for well-reasoned decisions when deliberating about moral problems. (shrink)

In this paper we aim to shed light on the dynamics of regional identity construction and deconstruction. We will argue that four forms of identity can be identified that are linked through various processes of change. To that end, we will theoretically conceptualise 'identity' by discussing historical and current scholarly debates on identity in a variety of scientific disciplines. Then, we will argue that the mutual contradiction of the current theories is a paradox if seen from the angle of regional (...) identity construction and deconstruction. Building upon elements from the various theoretical approaches, we propose a heuristic model describing the dynamics of identity construction and deconstruction, which will be explored by means of the example of the Green Heart region, a spatial planning concept in western Holland. (shrink)

Synthetic biology is an emerging technology that asks for inclusive reflection on how people frame the field. To unravel how we can facilitate such reflection, this study evaluates the Frame Reflection Lab. Building upon playfulness design principles, the FRL comprises a workshop with video-narratives and co-creative group exercises. We studied how the FRL facilitated frame reflection by organizing workshops with various student groups. Analysis of 12 group conversations and 158 mini-exit surveys yielded patterns in first-order reflection as well as patterns (...) in second-order reflection. Also patterns in participants’ framing of synthetic biology could be induced; participants’ viewpoints converged to some extent, yet with openness to individual viewpoint differences. Although the FRL method fortified the reflection processes of participants, the narratives and the workshop’s flexible format could inhibit the reflection too. Therefore, we advise designers of future frame reflection methods to apply stronger conversational facilitation and narratives of slightly mysterious yet identifiable narrators, in case e.g. video-narratives are created and used to scaffold the reflection process. Nevertheless, we argue that the use of a playful frame reflection method like the FRL could function well as a step to precede more application-specific deliberation or decision-making on synthetic biology and as a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further responsible development of the emerging field. (shrink)