Background: Family presence during invasive procedures and cardiopulmonary resuscitation (FPDR) is a highly controversial issue, with divergence of opinion among health professionals, with clinical evidence in favor, and with barriers to its implementation in comprehensive patient care. Many international organizations support health policies for its implementation, but it is not a widespread practice. Little research has been conducted on this subject from the perspective of patients and families. Objective: To learn opinions, perceptions, and desires of family members and patients in (...) terms of family presence during invasive procedures and cardiopulmonary resuscitation. Method: Qualitative descriptive study, using semi-structured interviews with relatives and patients regarding their experiences and perceptions about FPDR (n = 18) from 8 October 2017 to 8 March 2018. The interviews were recorded and transcribed verbatim for later analysis using the method of content analysis. Ethical considerations: This study has the approval of the Clinical Research Ethics Committee of the Fundació Unió Catalana d’Hospitals and ethical considerations were carefully regarded throughout the study. Results: Three significant categories were identified: knowledge, respect for rights, and accompaniment of the patient, relating FPDR to courage, emotional support, and trust in professionals. Conclusion: FPDR is an unusual practice; it is not offered to patients or their families, and it is not considered a patient’s right, although most of the interviewees support it. The desire for accompaniment is conditioned by the courage and knowledge of the accompanying persons, as well as the degree of invasiveness of the procedures. The results of this study provide information for a change of vision in patient-centered care. (shrink)

The modern critical approach to things hagiographical still wavers when it comes to taking leave of twelve lines of iambic invective, branded with wonderful delicacy of touch on the saintly foreheads of two Palestinian brothers, Theodore and Theophanes, the so-called “Graptoi”. Barry Baldwin, noting that C.A. Trypanis, unlike the great B. Bury and others, was inclined to disbelieve the story, could not help expressing the hope that it was true (An Anthology of Byzantine Poetry, Amsterdam 1985, pp. 142–3). It is (...) of course only one of the many stories concocted by iconodule propaganda. The central question has to be formulated in more general terms: how is history made? History here primarily in the sense of the construction of the past by the Byzantines themselves, was embodied in historical narratives moving between hagiography and historiography. Trying to lay bare the basis and elements of such constructs will always remain a major task of critical historical scholarship. (shrink)

Background Changes in health needs led to an increase in virtual care practices such as telemedicine. Nursing plays an essential role in this practice as it is the key to accessing the healthcare system. It is important that this branch of nursing is developed considering all the ethical aspects of nursing care, and not just the legal concepts of the practice. However, this question has not been widely explored in the literature and it is of crucial relevance in the new (...) concept of care. Objective The purpose of this scoping review is to identify the ethical aspects of the development of telemedicine from a nursing practice perspective. Methods A scoping review of the literature based on Arksey and O’Malley’s framework. The search was conducted in Scopus, PubMed/MEDLINE and CINAHL databases, from 2012 to 2022. A total of 1322 articles were retrieved, of which 12 met the inclusion criteria. Ethical considerations The research was conducted in accordance with the best scientific practices. Findings The most relevant aspects were the safety of the patient, the benefits for the user and the digital competence of the professionals. Informed consent and patient’s willingness to use new technologies were relevant to the practice, as was person-centered care and how telemedicine can influence the quality of the therapeutic relationship. Another relevant issue was the concern about professional competence for optimal outcomes. Conclusion It is necessary to further explore and develop the ethical aspects of the new practices, disassociating them from the legal aspects only. Professionals demand more training providing them with more competence and confidence. (shrink)

During the past few years, the IRBIT domain has emerged as an important add‐on of S‐adenosyl‐L‐homocystein hydrolase (AHCY), thereby creating the new family of AHCY‐like proteins. In this review, we discuss the currently available data on this new family of proteins. We describe the IRBIT domain as a unique part of these proteins and give an overview of its regulation via (de)phosphorylation and proteolysis. The second part of this review is focused on the potential functions of the AHCY‐like proteins. We (...) propose that the IRBIT domain serves as an anchor for targeting AHCY‐like proteins towards cytoplasmic targets. This leads to regulation of (i) intracellular Ca2+ via the inositol 1,4,5‐trisphosphate receptor (IP3R), (ii) intracellular pH via the Na+/HCO3− cotransporters (NBCs); whereas inactivation of the IRBIT domain induces (iii) nuclear translocation and regulation of AHCY activity. Dysfunction of AHCY‐like proteins will disturb these three important functions, with various biological implications. BioEssays 30:642–652, 2008. © 2008 Wiley Periodicals, Inc. (shrink)

Research involving children or other incompetent subjects who are deemed unable to provide informed consent is complex, particularly in the case of research that does not directly benefit the research subjects themselves. The Helsinki Declaration, the World Medical Association's landmark document for research ethics, therefore states that incompetent research subjects must not be included in such research unless it entails only minimal risk and minimal burden. In this paper, we argue that now that research in these groups is expected to (...) expand, this undifferentiated minimal risk and burden requirement does not suffice any more. In the upcoming revision of the Declaration, the paragraph at stake should be refined in such a way that it is not unnecessarily restrictive or more permissive than can be ethically justified. Our first recommendation is to stimulate research ethics committees to identify more accurately those risks and burdens that the research subjects must undergo solely for research purposes by distinguishing between two types of study procedures instead of between two types of studies. Our second recommendation is to allow for exceptions to the minimal risk and burden requirement in cases of exceptionally valuable studies that involve subjects who can give their assent to participate in the study and that involve at most a minor increase over minimal risk and/or burden. (shrink)

BackgroundNormality is both a descriptive and a normative concept. Undoubtedly, the normal often operates normatively as an exclusionary tool of cultural authority. While it has prominently found its way into the field of medicine, it remains rather unclear in what sense it is used. Thus, our study sought to elucidate people’s understanding of normality in medicine and to identify concepts that are linked to it.MethodsUsing convenient sampling, we carried out a cross-sectional survey. Since the survey was advertised through social media, (...) we employed an online survey. We performed descriptive and inferential analyses. Predictors were chosen in a theory-driven manner.ResultsIn total, 323 persons from 21 countries completed the survey. Analysis revealed that the overall acceptance of normality in medicine was associated with notions of injustice, authority, discrimination, and with having a medical profession. More precisely, for the field of mental health, injustice insensitivity, genderism and transphobia, and authority were positively associated with a person’s acceptance of normality; and, for the field of physical health, injustice insensitivity and having a medical profession were positively associated with a person’s acceptance of normality. Finally, participants’ acceptance of the use of normality in the area of mental health was lower than in the area of physical health.ConclusionsWhat is considered normal has implications for clinical practice, both at an individual and at a policy-level. Acknowledging its normalistic condition, the discipline of medicine has to confront itself with its own contribution to the augmentation of social inequalities through the excessive reliance on the concept of normality. Research that centers the lived experiences of those who are being systematically marginalized because they are deemed abnormal is needed. By empirically elucidating the conceptual relationships between normality in medicine and other variables, we provide points of leverage to deprive normality of its normative power. For medicine, this is needed to first do no harm. (shrink)

Esta entrevista tem como escopo registrar algumas das experiências e saberes de uma das maiores sociólogas do Brasil, Mary Garcia Castro. Graduada em Ciências Sociais pela Universidade Federal da Bahia, mestre em Sociologia da Cultura pela mesma instituição. Também possui mestrado em Planejamento Urbano e Regional pela Universidade Federal do Rio de Janeiro e doutorado em Sociologia pela University of Florida. Ela tem um vasto currículo marcado por atuações e publicações nacionais e internacionais. Mary Castro foi professora e pesquisadora da (...) UFBA, além de pesquisadora associada da Universidade Estadual de Campinas e da Universidade Católica de Salvador. (shrink)

Choreographing Space is a reflection on the collaborative work of e+i studio, a New York City based architecture practice. Founders Eva Perez de Vega and Ian Gordon guide the reader through a dynamic selection of projects, each one opening us up to their relationship with the choreography of human and nonhuman forces at play. -/- Born as a retrospective and future-oriented book, it engages philosophical thought with architectural projects located in Europe, Asia, and the US, as well as speculative scenarios (...) that offer an alternative, less human-centric way of practicing architecture. -/- Organised into four parts, each part opens with a philosophical text that acts as an insightful prelude to the topics, questions and reflections posed by each project. Each part concludes with a speculative scenario, where one of the projects is imagined thriving in a future where life is now almost extinct. These are not intended as apocalyptic or even nostalgic scenarios, but rather as affirmative alternatives to the bleak imaginary arising from the world’s current climate crisis. (shrink)

This article aims to make a case for the need to sensitize the medical community on the importance of providing sexual health information in the care of intersex adolescents and young adults for whom sexuality and intimacy are sensitive subjects—and to go beyond a narrow focus on surgical outcomes. For this purpose, this article gives voice to the lived experience of “Emma,” a young adult who identifies as intersex. Setting up strong collaboration between medical teams and intersex support groups might (...) be the best way forward to provide high-quality care to youth born with variations of sex characteristics. (shrink)

Architecture and human-built structures are embedded with speciesist practices of domination over the environment, where humans are considered special and superior to other species. This (hu)man exceptionalism has driven architecture and the built environment to be conceived in opposition to ‘nature’, dominating natural terrains and consequently displacing or instrumentalizing the many other species that are given little to no ethical consideration. This way of intervening in the world is leading to the existential questions that must be posed given our global (...) climate crisis. A reframing of human intervention as ‘built environment’ placed in opposition to the ‘natural environment’ of supposedly passive nature, is urgently needed. The motivation for this paper is rooted in a deep concern for the role of humans in the climate crisis and a realization that architecture as a discipline is complicit in elevating the human category above all other beings in nature. There are biases embedded in the practices and teaching of architecture that need to be interrogated and reflected upon, starting with the role models and ideals that we unwittingly operate within. To contextualize the idea of human exceptionalism in architecture, we will explore deep-seeded ideals in architecture linked to the concept of Rectitude as a form of ‘rightness’ -or correct- mode of intervening in the world, conceptualized by Western men as a human-centric practice distinct from nature-made. Supported by Ecofeminist thought, the aim is to open alternative models for world-building and housing humans on earth living in its sixth extinction. (shrink)

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the (...) Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)

From past research it is well known that social exclusion has detrimental consequences for mental health. To deal with these adverse effects, socially excluded individuals frequently turn to other humans for emotional support. While chatbots can elicit social and emotional responses on the part of the human interlocutor, their effectiveness in the context of social exclusion has not been investigated. In the present study, we examined whether an empathic chatbot can serve as a buffer against the adverse effects of social (...) ostracism. After experiencing exclusion on social media, participants were randomly assigned to either talk with an empathetic chatbot about it (e.g., “I'm sorry that this happened to you”) or a control condition where their responses were merely acknowledged (e.g., “Thank you for your feedback”). Replicating previous research, results revealed that experiences of social exclusion dampened the mood of participants. Interacting with an empathetic chatbot, however, appeared to have a mitigating impact. In particular, participants in the chatbot intervention condition reported higher mood than those in the control condition. Theoretical, methodological, and practical implications, as well as directions for future research are discussed. (shrink)

Two populations are subdivided into two categories of individuals (hawks and doves). Individuals fight to have access to a resource which is necessary for their survival. Conflicts occur between individuals belonging to the same population and to different populations. We investigate the long term effects of the conflicts on the stability of the community. The modelis a set of ODE's with four variables corresponding to hawk and dove individuals of the two populations. Two time scales are considered. A fast time (...) scale is used to describe frequent encounters and fightings between individuals trying to monopolize the resource. A slow time scale is used for the demography and the long term effects of encounters. We use aggregation methods in order to reduce this model into a system of two ODE's only for the total densities of the two populations which is found to be a classical Lotka-Volterra competition model. We study different cases of proportions of hawks and doves in both populations on the global coexistence and the mutal exclusion of the two populations. Pure dove tactics in both populations are unstable. In cases of mixed hawk and dove in both populations, there is coexistence. Pure dove or mixed hawk-dove tactics in one population can coexist with pure hawks in the other one when the costs of fightings between hawks are large enough. (shrink)

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more “traditional” ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called “older” mother. For this purpose, we start by exploring some (...) of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining “older” motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable. (shrink)

‘Religion and corporeality’. At first sight, the coordinating conjunction «and» sounds rather odd here because in the vision of many people spirituality and materiality necessarily exclude each other. Still, many scholars have offered abundant evidence that Christianity is a religion of embodiment. Yet, as will become clear from the works of the theologians Erik Peterson and André Guindon, the turn toward the body within Christianity is primarily a turn toward a clothed body. This may explain why the Italian philosopher Giorgio (...) Agamben has argued that our culture, which is heavily influenced by Christian theology, is characterized by the impossibility of nakedness. In his view, we should try to think a possible nakedness of man by liberating it, piece by piece, from the theological fabric which is wrapped around it. The question that I want to raise here is whether such a naked nudity is really a human option. Drawing on Pope John Paul II’s Theology of the Body and introducing the notion of corporeal vulnerability, I will argue that it is not. (shrink)

Viola and Ben, two pediatric oncology patients, need to undergo chemotherapy that might decrease their fertility. Both of them want to participate in the decisions related to their cancer treatment and fertility preservation. Should they be involved, and if so when and how?In many jurisdictions, children are not entitled to provide legally valid consent for medical decisions.1 As a result, others, usually parents, take on the role of surrogate decision-makers who act in their best interest. Still, it is important to (...) keep in mind that the age limit for competence set by legislation does not necessarily coincide with children’s clinical decision-making capacity: some children may be able to make certain health-care... (shrink)

This study focuses on the application of multicriteria decision-making techniques, specifically the analytic hierarchy process (AHP), to identify corporate socialresponsibility information which both companies and stakeholders consider relevant and material. This work explains how the AHP methodology was applied in the selection of material indicators in corporate social responsibility reporting, the interpretation of these indicators and their relative importance. The results of this study are summarized in 60 indicators distributed in four areas: environment, economy, corporate governance and social. As this (...) last area contains the greatest number of indicators, it was divided into four sub-areas (human resources, human rights, product responsibility and society). (shrink)

The aim of the study is to encourage a critical debate on the use of normality in the medical literature on DSD or intersex. For this purpose, a scoping review was conducted to identify and map the various ways in which “normal” is used in the medical literature on DSD between 2016 and 2020. We identified 75 studies, many of which were case studies highlighting rare cases of DSD, others, mainly retrospective observational studies, focused on improving diagnosis or treatment. The (...) most common use of the adjective normal was in association with phenotypic sex. Overall, appearance was the most commonly cited criteria to evaluate the normality of sex organs. More than 1/3 of the studies included also medical photographs of sex organs. This persistent use of normality in reference to phenotypic sex is worrisome given the long-term medicalization of intersex bodies in the name of a “normal” appearance or leading a “normal” life. Healthcare professionals should be more careful about the ethical implications of using photographs in publications given that many intersex persons describe their experience with medical photography as dehumanizing. (shrink)

Democratic societies expect their armed forces to act in a morally responsible way, which seems a fair expectation given the fact that they entrust their armed forces with the monopoly of violence. However, this is not as straightforward and unambiguous as it sounds. Present-day military practices show that political assignments, social and cultural contexts, innovative technologies and organisational structures, present military personnel with questions and dilemma’s that can have far-reaching consequences for all involved – not in the last place for (...) the soldiers themselves. A thorough training and education, in which critical thinking is developed and stimulated, seems therefore a necessary condition for morally responsible behaviour. This book aims to contribute to this form of ‘reflective practitioning’ in military practice. (shrink)

Biobanks are important resources for improving public health and individual care. Some legal frameworks can be more or less conducive to advancing the potential benefits of biobanks. The purpose of this article is to assess biobanking legislation and practices in Spain to determine how well they fare in such a regard. We focus here on some of the primary ethical values that ground relevant legislation and that we believe are consistent with promoting biobanking benefits: the value of scientific research; efficient (...) use of scarce resources; and respect for the dignity of donors. We argue that although Spanish regulations advance these values in important ways, they also have provisions that undermine them and thus risk limiting the potential benefits of biobanks. We offer some suggestions for improvement. (shrink)

This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these (...) issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity. (shrink)

In his article, Bester (2018) criticizes the so-called “harm consensus” movement among a growing number of bioethicists and practitioners. He argues that the harm principle is unable to replace the...

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It (...) is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

ObjectiveLoss of control eating has been directly related to the core aspects of the psychopathology of eating disorders and to different dimensions of emotion and behavior regulation and self-criticism. This study investigates a model representing the interplay between these dimensions to understand LOC eating among a nonclinical sample.MethodsA total of 341 participants, recruited in a college campus, completed a set of self-report measures assessing LOC eating, weight suppression, psychopathology of eating disorders, depression, negative urgency, emotion regulation difficulties, and self-criticism. Path (...) analysis modeling tested a hypothesized model with 3 paths for LOC eating as follows: psychopathology of eating disorders; emotion and behavior regulation; and interplay between these paths.ResultsWe found goodness-of-fit indexes to our data: χ2 = 17.11, df = 10, Comparative Fit Index = 0.99, Tucker-Lewis index = 0.98, Root Mean Square Error Approximation = 0.045, Standardized Root Mean Square Residual = 0.041, suggesting that: participants with higher weight suppression showed higher degrees of the psychopathology of eating disorders, which was linked to higher levels of LOC eating; self-criticism was a mediator between emotion regulation and depression/negative urgency; self-criticism was a mediator between emotion regulation and disorder eating, which was significantly associated with LOC eating via increased negative urgency.ConclusionOur model shows that LOC eating occurs for individuals with the psychopathology of higher eating disorders who experience depressive symptoms and act rashly under distress for their inability to cope adequately with negative feelings of self-devaluation. These findings point to the importance of negative self-evaluations and feelings of inadequacy or worthlessness to understand LOC eating among college students. (shrink)

Open science (OS) is considered the new paradigm for science and knowledge dissemination. OS fosters cooperative work and new ways of distributing knowledge by promoting effective data sharing (as early and broadly as possible) and a dynamic exchange of research outcomes, not only publications. On the other hand, intellectual property (IP) legislation seeks to balance the moral and economic rights of creators and inventors with the wider interests and needs of society. Managing knowledge outcomes in a new open research and (...) innovation ecosystem is challenging and should become part of the EU’s IP strategy, underpinning EU policies with the new open science–open innovation paradigm. (shrink)

Dealing with soldier enhancement can be challenging for military physicians. As research on the ethics of soldier enhancement is mostly theoretical, this study aims to gain insights into the actual moral issues military physicians encounter, or expect to encounter. To that end, we carried out a qualitative study involving six focus groups of Dutch military physicians (n = 28) in operational roles. The participants voiced their concerns about moral issues concerning soldier enhancement. Based on the group discussions, and using inductive (...) thematic analysis, we ascertained three major themes: (1) Doing no harm in soldier enhancement: uncertainty and high stakes; (2) Dependency relationships and conflicting moral responsibilities; and (3) The risk of ethical slippery slopes. Our findings illustrate that dealing with these moral responsibilities requires considerable skill and acuity to weigh up for all the situated complexities and dependency relationships that go beyond abstract rules or moral principles. A care-ethical approach that acknowledges the contextual and relational aspects of moral complexities along with peer consultation and joint reflective dialogue on moral issues can help military physicians deal with soldier enhancement responsibly. (shrink)

Machine Learning (ML) is on the rise in medicine, promising improved diagnostic, therapeutic and prognostic clinical tools. While these technological innovations are bound to transform health care, they also bring new ethical concerns to the forefront. One particularly elusive challenge regards discriminatory algorithmic judgements based on biases inherent in the training data. A common line of reasoning distinguishes between justified differential treatments that mirror true disparities between socially salient groups, and unjustified biases which do not, leading to misdiagnosis and erroneous (...) treatment. In the curation of training data this strategy runs into severe problems though, since distinguishing between the two can be next to impossible. We thus plead for a pragmatist dealing with algorithmic bias in healthcare environments. By recurring to a recent reformulation of William James’s pragmatist understanding of truth, we recommend that, instead of aiming at a supposedly objective truth, outcome-based therapeutic usefulness should serve as the guiding principle for assessing ML applications in medicine. (shrink)

Communication about diagnosis and medical treatment for children suffering from life-threatening illnesses is complex. It is a primary step in involving underage patients and families in care and lays the foundation for obtaining parental permission and patient assent for treatment. In practice child participation in care is often difficult to obtain due to patients' different and sometimes fluctuating preferences, but also parents' protective strategies. Physicians may be susceptible to parental wishes to limit information and feel uncomfortable discussing issues related to (...) uncertainty of cure with patients. A qualitative study in Romanian paediatric oncology units was conducted to explore children's involvement from the perspectives of parents and oncologists. Interviews with participants discussed 18 patient cases. Data were transcribed and thematic analysis was used to interpret and mine patients' involvement during treatment. Different facets of patient participation were identified: restricting, widening and enhancing involvement. A fourth category, unintentional involvement, occurred for all patients due to children's observations during long-term hospitalisations and access to Internet. Uncertainty overarched parental attitudes regarding the extent to which children should be included. Physicians usually complied with parental wishes to limit involvement, but together with parents involved patients at least in a practical way. Adults' protective attitude may backfire, as adolescents' online searches often expose patients to worse-case scenarios. Further research should acknowledge the hazards of restricted diagnosis disclosure and develop clinician tools to support families in communicating with patients. This should be paralleled by physician efforts to elicit patients' needs regarding participation. (shrink)

In recent years, the stakeholder approach has been widely applied in the debate on corporate social responsibility (CSR). Although many authors of this approach have reviewed many elements of the model, they have unconditionally accepted several criteria assumed by Freeman ( 1984 ) to identify stakeholders. In general, stakeholder authors have assumed that (a) the company establishes dyadic relationships with other agents, and (b) decisions made by a company only have foreseen and direct effects on other agents. These criteria have (...) enabled researchers to understand simple processes. However, they have also prevented researchers from explaining how action comes about, and how responsibility is shared, in many complex processes taking place in contemporary societies. Such complex processes involve many agents, and each decision can generate unexpected effects which accumulate or disseminate. Furthermore, the normative structure governing these processes can affect and/or be affected by the actions of agents. In this study, we propose new criteria to expand the stakeholder model and facilitate the study of CSR in such processes. (shrink)

Speaking about oneself in order to change the world. Juri Vella is a Forest Nenets reindeer herder, writer and fighter for his people’s rights. In his private life, he enjoys silence, as it is a rule in his culture. But the public man, who is graduated from the Literature Institute in Moscow, is aware of the power of speech, and knows how to use it for his goals, to support his vision. He had to realise that the native peoples in (...) Western Siberia have lost much of their skills and acquired none during the Soviet period, in which they were compelled to integrate in the society and to attend Soviet institutions as school or the army. This process has been intensified in the latest fifty years, with the invasion of their traditional territories by oil industry. But Juri Vella expects the oil reserves to finish one day, and then the aborigines will lack the goods bestowed upon them by “Western” society and will have to survive with the help of the traditional skills. He tries to promote his vision of the natives able to live in both worlds and able to recover their dignity. This article analyses his public speech in this behalf and the way Juri Vella speaks about himself, enlarging his “ego” both to his clan and the native peoples in general and connecting it very directly with the space around him. The mainsources are Eva Toulouze’s fieldwork at Juri Vella’s taiga camp, living with the family five months, and the film Liivo Niglas has shot about him in 2003. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)