In line with public policies, the French Association of Paralyzed People (APF) promotes the social participation of people with disabilities. This objective can be achieved both through participation in activities and participation in decision-making processes. This dual categorisation raises questions about the compatibility of logics of support and program objectives across these two facets of participation. Arising from work conducted in the context of a PhD dissertation, this article is based on document analysis and 49 indepth (...) interviews with employees, volunteers, members and users of the APF. The results highlight a tension, from the point of view of professional supports, between participation in activities and participation in decision-making. For the sake of swift and tangible results, professionals are encouraged to offer activities and services to achieve faster and more effective social participation. However, this places them in a complex, or even inextricable, position when it comes to enhancing users’ participation in decision-making. (shrink)

Les politiques urbaines se heurtent aux pratiques d’appropriation par les pauvres, qui demandent à être indemnisés en cas d’expulsion par des grands travaux, même quand ils ont voté pour la municipalité qui les a ordonnés. Mais du coup ils veulent participer aux décisions. Leurs luttes multiformes se réfèrent au commun de la ville produit par les pratiques sociales.

Andreas Christiansen,Karin Jonch-Clausen,Klemens Kappel | : Many instances of new and emerging science and technology are controversial. Although a number of people, including scientific experts, welcome these developments, a considerable skepticism exists among members of the public. The use of genetically modified organisms is a case in point. In science policy and in science communication, it is widely assumed that such controversial science and technology require public participation in the policy-making process. We examine this view, which we call the (...) Public Participation Paradigm, using the case of GMOs as an example. We suggest that a prominent reason behind the call for public participation is the belief that such participation is required for democratic legitimacy. We then show that the most prominent accounts of democratic legitimacy do not, in fact, entail that public participation is required in cases of controversial science in general, or in the case of GMOs in particular. | : Beaucoup d’avancées scientifiques et de technologies émergentes sont controversées. Bien qu’un certain nombre de personnes, incluant des experts scientifiques, sont favorables à ces développements, la population demeure largement sceptique. Le recours aux organismes génétiquement modifiés illustre une telle situation. Dans les politiques et communications scientifiques, il est largement tenu pour acquis que de telles controverses scientifiques et technologiques requièrent la participation publique dans le processus de prise de décision politique. Nous examinons ce point de vue, que nous appelons le paradigme de la participation publique [Public Participation Paradigm], en nous servant du cas des OGM. Nous suggérons qu’une raison centrale en faveur de l’appel à la participation publique se situe dans la croyance qu’une telle participation est requise par la légitimité démocratique. Nous montrons ensuite que la plupart des principales conceptions de la légitimité démocratique n’impliquent pas, en fait, que la participation publique puisse être requise pour les controverses scientifiques en général, et pour les OGM en particulier. (shrink)

SUSANNE UUSITALO,ANNA AXELIN | : Infants born to opioid-dependent women are typically admitted to neonatal intensive-care units for management of neonatal abstinence syndrome, and their treatment requires medical decision making. It is not only the infants’ vulnerability, in terms of their incompetence and medical condition, that is present in those circumstances, but also the mothers’ situational vulnerability, which arises with the possibility of their engagement in medical decision making regarding their infants. Vulnerability is a concept that has often, if not (...) always, been traced back to individuals. In this paper, we suggest that in some cases evaluations and attributions of vulnerability to either individuals or populations fall short of capturing all aspects of vulnerability. We ask whether this individual-based evaluation is sufficient for identifying all the vulnerabilities arising in the situation. Moreover, we suggest that the “unit” of vulnerability attribution, typically a person who is a likely target of harm and/or moral violations, should not simply be reduced to the individual. Rather, the unit should in some cases be seen as constituted by an entity that is interpersonal in nature. The kind of real vulnerability that we identify in this paper is inherently embedded in a dyadic relationship, and notions of vulnerability that decompose social relations into individuals run the risk of missing the vulnerability in question. We elaborate this kind vulnerability by discussing of role of opioid-dependent mothers in decision making about their infants’ treatment. | : Les nourrissons nés de femmes dépendantes aux opioïdes sont généralement admis dans des unités de soins intensifs néonatals pour la prise en charge du syndrome d’abstinence néonatale, et leur traitement nécessite une prise de décision médicale. Ce n’est pas seulement la vulnérabilité des nourrissons, en termes d’incompétence et de dépendance médicale, qui est présente dans ces circonstances, mais aussi la vulnérabilité situationnelle des mères, qui découle de la possibilité de leur participation à la prise de décision médicale concernant leurs enfants. La vulnérabilité est un concept qui a souvent, sinon toujours été relié à des individus. Dans cet article, nous suggérons que, dans certains cas, les évaluations et les attributions de vulnérabilité aux individus ou aux populations ne permettent pas de saisir tous les aspects de la vulnérabilité. Nous demandons si cette évaluation individuelle est suffisante pour identifier toutes les vulnérabilités qui apparaissent dans la situation. De plus, nous suggérons que l’« unité » d’attribution de la vulnérabilité, généralement une personne qui est une cible probable de dommages ou de violations morales, ne devrait pas simplement être réduite à l’individu. Au contraire, l’unité devrait dans certains cas être considérée comme une entité de nature interpersonnelle. Le type de vulnérabilité réelle que nous identifions dans cet article est intrinsèquement intégré dans une relation dyadique, et les notions de vulnérabilité qui décomposent les relations sociales en individus risquent de manquer la vulnérabilité en question. Nous développons ce type de vulnérabilité en discutant du rôle des mères dépendantes aux opioïdes dans la prise de décision concernant le traitement de leurs enfants. (shrink)

Le développement de l'interconnexion électrique en Europe et aux États-Unis depuis la fin du XIX siècle jusqu'à nos jours a constitué une véritable mutuelle de territorialisation de l'innovation. Son économie s'inscrit dans l'articulation de différentes formes de proximité qui permettent aux acteurs d'agir simultanément. L'interconnexion est devenue clairement aujourd'hui une question de communication politique, incarnant les enjeux et les ambiguïtés de la démocratie participative. Dans un domaine où l'innovation technologique proprement dite n'a pas fait de saut décisif depuis trois décennies, (...) avec une grappe complète d'innovations, contrairement par exemple aux télécommunications, l'enjeu fondamental réside dans la recherche des articulations spatiales les plus pertinentes, au nom d'un intérêt général de plus en plus fragile.The development of the electrical interconnection in Europe and the United States since the late nineteenth century until today has been a real mutual territorialisation of innovation. Its economy is in the articulation of different forms of proximity that allow players act simultaneously. The interconnection has become clear today a matter of political communication, embodying the challenges and ambiguities of participatory democracy. In a field where technological innovation itself did not jump decisive three decades, complete with a bunch of innovations, unlike, for example telecommunications, the fundamental challenge lies in finding the most relevant spatial articulations on behalf of the general interest of more fragile. (shrink)

Résister n'est pas seulement, pour les individus, un acte exceptionnel réservé aux temps de tragédies. Et, s'il peut prendre une tournure plus nettement politique, plus clairement dissidente, dans ces moments de crises sociales, il n'en existe pas moins une foule de menues résistances quotidiennes à l'ordre du monde. Résistances politiques, résistances du quotidien, ce livre n'a pas voulu choisir entre les unes et les autres. Les frontières peuvent être floues, quand on y regarde de prêt, entre les engagements suscités par (...) des situations dramatiques, qui ressortent souvent de décisions très intimes, et les refus du sort plus banals, qui mettent toujours en question, même sur un mode assourdi, le fonctionnement de la cité. Les contributions rassemblées dans ces pages présentent une série de cas de résistance, plus ou moins spectaculaires, qu'opposent des individus ou des groupes sociaux aux pouvoirs et aux hiérarchies qui structurent leur environnement. Appartenant à des contextes historiques et sociaux contrastés, exposées par des spécialistes de disciplines différentes, elles ont en commun d'interroger, chacune à leur manière, les raisons qui poussent les acteurs à résister, les modes de leur résistance, et finalement leur prix et leurs conséquences pour ces acteurs. Au-delà de cette réflexion croisée sur l'acte de résistance apparaît un monde social tissé de normes et de contraintes dans lequel ils luttent pour se ménager encore, même en bout de course, un espace de liberté, pour affirmer et faire reconnaître une existence et une personnalité, ou pour se conformer à des valeurs. Et c'est, en se confrontant à la conscience sociale et à la geste de ces individus résistants, à une réflexion éthique que ce livre invite son lecteur. (shrink)

La France a été le premier pays au monde à institutionnaliser la bioéthique en créant un comité consultatif national d’éthique. Les philosophes qui participent aux débats de cette instance normative doivent se livrer à une expérience de pensée inhabituelle, sur un mode collégial et interdisciplinaire. Compte tenu des décisions politiques qui seront prises en fonction des recommandations du Comité, leur implication doit aussi s’accompagner d’une réflexion critique et épistémologique sur le processus de production des avis.

Hélène Landemore ,Aude Bandini | : Cet article présente les bases d’un argument épistémique en faveur de la démocratie définie comme procédure de décision collective. Il explore également les implications d’un tel argument épistémique par rapport à d’autres justifications établies de la démocratie, par rapport aux explications scientifiques de ses succès empiriques, et en termes de politiques publiques à mener. En ce qui concerne l’argument épistémique proprement dit, il repose sur le concept de « raison démocratique », autrement dit l’intelligence (...) collective des individus dans le domaine politique, et propose, de manière contre-intuitive, que la raison démocratique est davantage tributaire de la diversitécognitive des individus qui prennent par aux décisions que de leurs aptitudes personnelles. Généralement, l’argument de la raison démocratique complète les arguments procéduraux basés sur l’équité et l’égalité pour offrir une explication fonctionnaliste complète de la démocratie. Pour finir, cet article défend l’idée de réformes institutionnelles favorisant la participation citoyenne dans le processus de prise de décision collective. | : This paper presents the foundations of a systematic epistemic case for democracy as a collective decision-rule and explores the implications of this epistemic claim for normative justifications of democracy, scientific explanations of its empirical success, and policy reforms. As far as the epistemic case is concerned, the paper proposes an account based on the concept of “democratic reason,” or the collective intelligence of the people in politics. The paper argues that, counter-intuitively, democratic reason is more a function of the cognitive diversity of the individuals taking part in the decision than of their individual ability. As an account of democracy’s epistemic benefits, the argument from democratic reason supplements procedural accounts based on fairness and equality to provide a complete functionalist explanation of democracy. Finally, the argument supports policy reforms increasing citizens’ participation in the collective decision-process. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, (...) there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives (...) and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process. (shrink)

Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making. To analyse the patients’ narratives on the background of the ethical discourse on various approaches to treatment decision-making. Design: In-depth interviews with themes identified using principles of grounded theory. Participants: 22 patients with long-standing rheumatoid arthritis. Main outcome measures: Qualitative data on patients’ perceptions and preferences regarding information and participation in decision-making about treatment. Results: Decision-making about treatment has been (...) described by the patients as a process consisting of different stages with shifting loci of control and responsibility. Patients initially received one treatment recommendation and were not aware of alternative treatment options. Those participants in this study who wanted information about negative effects of a treatment cited “interest in one’s own health” and the potential “use of information” as reasons for their preference. The physicians’ expert knowledge and clinical experience regarding the effects of medication were cited as arguments by patients for a treatment recommendation. Conclusions: The patients’ accounts of decision-making about treatment differ from models of physician–patient relationship that have been put forward in ethical discourse. These differences may be relevant with respect to the starting point of an ethical analysis of treatment decision-making. Patients’ accounts with respect to a lack of information on treatment alternatives point to ethically relevant challenges regarding treatment decision-making in clinical practice. (shrink)

This research aims to study possible effects or impacts of COVID-19 in the context of a democratic organizational system analyzing how COVID-19 has influenced employees’ perception of their participation in decision-making and its impact on some psychological outcomes and emotions. COVID-19 has accelerated the process of implementation of new frameworks at work that have generated the modification of culture and employee management practices. Our hypothesis are, on the one hand, that COVID-19 has generated changes in participation structures and (...) internal communication mechanisms, having to make modifications not to deteriorate the perception of employees about their participation in decision making. On the other hand, COVID-19 has generated changes in the psychological outcomes and emotions of the employees. In the study, we analyze a cooperative belonging to the MONDRAGON cooperative group, where participation in decision-making and ownership is in its DNA. Through qualitative and quantitative methodologies, involving 42 employees, we investigate firstly, how COVID-19 has affected perceptions about participation in decision-making analyzing what role has played internal communication in these perceptions. Secondly, we investigate how COVID-19 has affected psychological outcomes and emotions. In this case, the perceptions arising from participation in decision-making focus on the assessment that participators make of the governance channels and the day-to-day meetings. Therefore, their appropriateness seems to be a key factor in the perception of participation in the COVID-19 era. Differences have been detected between the perceptions of blue and white collar employees. Such differences have also been founded in the psychological outcomes and emotions. Although this is a single case study, the analysis carried out provides elements of reflection to modify and restructure the decision-making and participation mechanisms, adapting them to the needs of blue and white collar employees in order to “guarantee” the expected outcomes. (shrink)

Just as burnout is manifested through changes in behavioural and communication patterns, it is important to examine whether certain aspects of communication can affect student burnout development. Therefore, this study aims to investigate the relationship between communication and academic burnout. To achieve this, the study proposes an integrated model examining the effects of three communication dimensions – support from academic staff, support from colleagues, and participation in decision-making – on four different dimensions of academic burnout, as well as students’ (...) overall burnout. The model is tested using structural equation modelling (SEM) analysis. High coefficients of determination regarding particular burnout dimensions validate the strength of the proposed model. The results show that support from academic staff and support from fellow students significantly and negatively influence academic burnout, and might be instrumental in its reduction. Unexpectedly, participation in decision-making is shown to be positively related to academic burnout. (shrink)

Cette contribution analyse le Grand débat national (2019) et la Convention citoyenne pour le climat (2019-2020) à la lumière de l’opposition élaborée par la théorie politique entre démocratie participative et démocratie délibérative. Chacun d’entre eux démontre la difficulté à articuler participation et délibération. Au-delà de cette opposition, ces deux processus partagent la caractéristique fondamentale de n’être que purement consultatifs. Seule leur inscription dans les institutions politiques permettra aux formes délibérative et participative d’inclusion des citoyens dans la décision publique d’être (...) pleinement démocratiques. (shrink)

The promotion system in Chinese universities has been undergoing a reform since 2017. This study employed an online survey validated by confirmatory factor analysis with 372 Chinese teachers to investigate the extent to which they were empowered by the two practices of participation in decision-making and professional growth in the reform and level of their appraisal of and behavioral intentions toward the new promotion system. Structural equation modeling was used to measure how the two empowerment practices influenced the teachers' (...) appraisal of and behavioral intentions toward the new system. The findings suggest that the Chinese teachers had low participation in decision-making and medium institutional support for professional growth, relatively low nonmonetary cost-benefit appraisal and medium practicality and fairness appraisal of the new system, and relatively high behavioral intentions to increase efforts according to the new system. Besides, participation in decision-making had a significantly direct effect on practicality and nonmonetary cost-benefit appraisal. Professional growth had a significantly direct effect on practicality, fairness, and nonmonetary cost-benefit appraisal and behavioral intentions. Nonmonetary cost-benefit appraisal had a significantly direct effect on behavioral intentions. The implications are that, in promotion system reforms, the two empowerment strategies of shared decision-making and professional growth can help establish a new promotion system with high nonmonetary cost-benefits for teachers and raise teachers' behavioral intentions to develop and pursue promotion. They can also contribute to the formulation of a new promotion system that effectively evaluates individual teacher's achievements according to the characteristics of the specific university, teacher type, and discipline. This study had the limitations of using convenience sampling, collecting cross-sectional data through self-administered questionnaires, and reporting only teachers' side of the story. Therefore, it is recommended that future studies target both teachers and administrators, employ a mixed-method design, collect quantitative data through random sampling, and take a longitudinal view. (shrink)

Rousseau et Habermas viennent confirmer l’appréhension de la démocratie, ce régime politique révolutionnaire, en la considérant comme la forme rationnelle de gestion consensuelle des affaires publiques de la société des êtres humains. En révélant leurs conceptions de la démocratie, ces penseurs vont prôner un consensus particulier. Pour Rousseau, la démocratie est favorable au consensus de cœur en permettant aux citoyens d’être des citoyens magistrats dans le processus de démocratisation de la société. Quant à Habermas, il va prôner un consensus des (...) arguments en démocratie. Sans doute, la participation, sur la base de la logique informelle ou théorie de l’argumentation, permet-elle à la délibération de donner à la démocratie radicale toute sa crédibilité.The thinking of Rousseau and Habermas, as social theorists, confirms the understanding of democracy as a revolutionary political system, by considering it as the rational form of consensual management of public affairs in a human society. In putting forward their concept of democracy, these thinkers advocate particular forms of consensus. For Rousseau, democracy promotes a consensus of the heart by allowing citizens to be citizen-magistrates in the process of democratization of society. Habermas, however, advocates a consensus of argument in a democracy. Participation in deliberations, when based on informal logic or argumentation theory, is certainly what gives radical democracy its credibility. (shrink)

Dans le système français, comme dans celui des familles de droit continental, le droit est édicté par un pouvoir et son interprétation est placée sous le contrôle des seules cours suprêmes. Ce modèle vertical a été mis à l’épreuve au début des années soixante par l’introduction de l’informatique juridique. Les premières banques de données décisionnelles s’adressent aux professionnels, et se fondent sur un principe documentaire (I). Le décret du 7 août 2002 pose le principe d’un droit d’accès gratuit du public (...) aux données essentielles du droit, fondé sur la sélection des sources (II). En 2007, le principe d’exhaustivité est à l’origine d’une base décisionnelle des arrêts d’appel, mais sans ouverture au public (III). Enfin, la loi du 7 octobre 2016 introduit un principe d’accès gratuit du public aux décisions des juridictions du fond, ouvrant un droit de réutilisation dont s’emparent les producteurs de logiciels de justice prédictive (IV), et impliquant un renouvellement de la théorie de la jurisprudence (conclusion). (shrink)

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during (...) their child’s hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents’ wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents’ participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them. (shrink)

En quoi le corps participe-t-il de l'entente que l'homme a du monde? Que signifie dès lors écouter? Comment établir un rapport juste à l'animal? Quel sens prêter aux couleurs? Pourquoi la tonalité décisive de notre rapport au monde peut-elle advenir à la faveur d'expériences olfactives et gustatives? En quoi la tactilité incite-t-elle à considérer le corps vif comme une donnée originaire et à reconnaître qu'il est bien une vulnérabilité dotée d'aptitudes qui nous dispose au monde? Comment l'angoisse, révélée et cachée (...) tout à la fois par la maladie, est-elle chevillée au corps de l'être-au-monde, le Dasein? Qu'en est-il du corps dans la nostalgie, dans la mélancolie, dans l'ennui et dans la joie? Pourquoi la coexistence, supposant relations et rencontres, implique-t-elle l'articulation des corporéités vives comme dans le tact sensitif ou dans la jalousie amoureuse et dans l'amour pensé en terme de tonalité érotique? Comment comprendre la mobilité et parvenir ainsi jusqu'à l'éminente dignité ontologique du mouvement? De quoi la pensée est-elle redevable au corps? Telles sont les questions qui jalonnent cet ouvrage. Par son orientation résolument phénoménologique, l'Intelligence du corps entend renouveler l'entente du phénomène le plus proprement humain et, cependant, le plus malmené par la métaphysique. Prenant librement appui sur les vues inouïes de Martin Heidegger, consciente de l'actuelle soumission du corps de l'homme à l'arraisonnement technique, Ingrid Auriol ouvre une voie d'accès à l'intelligence du corps libérée de cette violence. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making (...) to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy (...) in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument.Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrolment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision (...) examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

Introduction: This study, the first of its kind in Iran, was to assess Iranian patients’ preferences for receiving information and participating in decision-making and to evaluate their satisfaction with how medical information is given to them and with their participation in decision-making at present. Method and materials: 299 of 312 eligible patients admitted to general internal medicine or surgery wards from May to December 2006 were interviewed according to a structured questionnaire. The questionnaire contained questions about patients’ preferences regarding (...) four domains of information and their participation in decision-making. Patients’ responses were measured on a visual analogue scale graded from 1 to 10. Results: The mean (SD) score for desire to receive information was 8.88 out of 10 (1.5) and for participation in medical decision-making was 7.75 out of 10 (3). The desire to receive information was greater in women than men (9.0 (1.5) vs 7.8 (1.4), p = 0.025). It was also correlated with their education (r = 0.2, p = 0.001) and their estimation of the severity of their own disease (r = 0.13, p = 0.027). The score for preference to participate in decision-making was higher in women than in men (7.95 (2.8) and 7.0 (3.2), respectively; β = 0.8, p = 0.022) and was negatively correlated with education (r = −0.14, p = 0.015). Discussion: This study shows that Iranian patients are highly interested in receiving information about their condition and participating in clinical decision-making. No predictive variable for such attitudes was found; therefore, the only way for the physician to recognise patients’ desire is to ask them explicitly. (shrink)

Theoretical and practical trends of corporate citizenship indicate a deepening partnership between business and community. Following these developments, the article develops a model for the participation of businesses in decision-making processes as part of policy making and social-economic planning in the community. The article focuses on three levels: It examines the benefits and risks of such participation; identifies the typical dimensions of the participation processes; and finally, provides guidelines on how to develop a participation strategy based (...) on the unique conditions of each business and community. (shrink)

This study explored the nature of patient advocacy among 40 institutionally employed registered nurses, nurse managers, clinical nurse specialists and nursing administrators. Participants were asked to define patient advocacy, to discuss their experiences with advocacy in institutions and their perceptions of risk associated with advocacy in institutional settings, and to identify one concept central to patient advocacy. The results delineated conceptual definitions of advocacy and numerous factors that influence nurses' decisions about acting as patient advocates in institutions. Additionally, they showed (...) striking similarities between conceptual terms used to define advocacy and terms used to define caring. Cet article est basé sur une enquête auprés de quarante infirmiers/ères, directeurs/ directrices, infirmiers/ères spécialisé(e)s et administrateurs employés dans des institu tions. On a demandé aux participants de définir la défense des malades, de discuter de leurs expériences concernant cette activité dans les institutions, de leurs perceptions des risques courus au cours de la défense et d'identifier un principe central à la défense des malades. Les résultats de l'enquête présentaient des définitions conceptuels de la défense ainsi que de nombreux éléments qui influencent les décisions prises par les infirmiers/ères qui assument la défence des malades dans les institutions. En plus, les résultats montraient de grandes ressemblances entre les expressions conceptuelles utilisées pour définir cette défense et les expressions utilisées pour définir les soins. In dieser Studie wird untersucht, was vierzig in Insitutionen angestellte Pflegende, Man ager, und andere Pflegeexperten unter Fürsprache verstehen, wie sie sie definieren, und was ihre Erfahrung mit Fürsprache am Arbeitsort ist. Die Beteiligten wurden gefragt, wie sie die Risiken der Fürsprache in Institutionen einschätzen, und sie wurden aufgefordert, ein allgemein gültiges Konzept für Patientenfürsprache zu identifizieren. Das Resultat zeigt begriffliche Definitionen der Fürsprache sowei verschiedene Faktoren, die die Entscheidungen des Pflegepersonals beeinflussen, wenn sie als Fürsprecher der Patienten handeln. Zugleich zeigte diese Studie auch grosse Aehnlichkeiten zwischen Begriffen der Fürsprache und der Pflege. (shrink)

Cet article a pour but d’expliquer en quoi l’urgence écologique nous impose de repenser le rapport de la démocratie aux territoires. Nos institutions politiques (internationales, nationales, locales) ne se montrent pas capables de faire face aux crises écologiques actuelles (climat, eau, biodiversité, approvisionnement énergétique). Or la solution n’est pas de valoriser l’échelon local au détriment du global en reconduisant les topoi philosophiques vantant les petites républiques ou promouvant la participation, mais de prendre les décisions adéquates à l’échelle pertinente. (...) La capacité d’ajustement spatiale et temporelle de la démocratie pourrait définir le principe de nouvelles institutions. (shrink)

Stakeholder participation is an increasingly popular ingredient within environmental management and decision-making. While much has been written about its purported benefits, a question that has been largely neglected is whether decision-making informed through stakeholder participation is actually likely to yield decisions that are morally justified in their own right. Using moral methodology as a starting point, we argue that stakeholder participation in environmental decision-making may indeed be an appropriate means to produce morally justified decisions, the reason being (...) that such participation may constitute an efficient way to satisfy the standard requirements on moral reasoning and moral justification. This finding also emphasizes the importance of identifying those settings most conducive to allowing different stakeholders to both challenge each other’s arguments and to adopt each other’s perspectives in order to make effective use of participation in environmenta... (shrink)

"Giambattista Vico conçoit une nature humaine tripartite. Il désigne la parole comme médiatrice entre le corps et l'âme ; et la vérité humaine comme convertibilité du verum factum. À l'encontre de l'intellectualisme spéculatif, il découvre une matérialité grossière décisive de la condition humaine propre à son processus évolutif. La praxis s'installe, ainsi, au centre de sa philosophie comme un avènement sémiotique et historique. En combinant l'historisation du langage et la lecture de l'histoire, l'objet de cette philosophie devient une plaidoirie en (...) faveur de l'autodidaxie des nations à édifier des civilisations et de la connaissance de soi comme faiseur de l'histoire de la nation. Selon Vico, l'établissement l'Universel et l'Éternel dans la pensée philosophique du 18e siècle marginalise les dynamiques locales, les corps et les âmes. Afin de combler ce manquement, il crée la notion des modifications des " mentes " en établissant la participation du local et sa temporalité appropriée dans l'universel et l'éternel. La prise en charge de l'intériorité appropriée aux sociétés régule la compréhension des médiations anthropologiques, des forces sémiotiques, ainsi que celle des déplacements des topiques de l'homme à l'acmé de sa civilité. Elle gère la continuité historique des choses humaines en tant que réalisation collective historiée. Conséquemment, le droit édicté selon les " citations des écrivains " court le risque d'opposer l'hégémonie du modèle prétendument universel à l'ordre socialement intériorisé. Néanmoins, l'exigence jurisprudentielle est une pratique de légitimation d'un gouvernement humain qui conserve simultanément la dignité et l'autonomie des nations."--Page 4 de la couverture. (shrink)

L’État est le plus souvent représenté comme une entité abstraite et neutre. Or il est fondamentalement une réalité concrète et située, qui s’incarne dans le travail de ses agents. Ceux-ci ne se contentent pas d’appliquer des directives et des procédures ; les jugements qu’ils formulent et les émotions qu’ils ressentent sont partie prenante de leurs décisions, dont la somme constitue l’action publique. Autrement dit, l’État est également une entité morale. C’est ce que montre cet ouvrage qui, au fil d’une (...) enquête ethnographique de cinq années, s’attache à comprendre l’ordinaire du fonctionnement de l’État à travers un ensemble d’institutions : la police, la justice, la prison, les services sociaux et la santé mentale, qui ont en commun d’avoir affaire, en large part, aux mêmes publics, composés d’individus de milieux populaires et précaires ou d’origine immigrée. Défini dans cette tension entre les politiques telles qu’elles se décident au sommet et les pratiques des agents dont les valeurs et les affects sont eux-mêmes nourris par les débats autour des problèmes sociaux qui font leur quotidien, l’État apparaît simultanément dans ses fonctions contradictoires d’État social en recul, d’État pénal en expansion et d’État libéral qui attend toujours plus de ses sujets. Cette attention à la manière dont la morale s’inscrit dans l’action publique participe ainsi de sa repolitisation. (shrink)

One of the most interesting features of Jürgen Habermas’s latest work on democracy is his attempt to acknowledge the problem of social complexity while remaining faithful to the core idea of the Rousseauian conception of democratic legitimacy: the idea that legitimacy is grounded on citizens’ participation in processes of opinion- and will-formation which ensure the reasonableness of collectivedecisions. The challenge for Habermas is to show how it is possible to conciliate the consequences of social complexity with this understanding of (...) legitimacy and popular sovereignty. Does Habermas’s attempt succeed? This is the question examined in the present article.L’un des aspects les plus intéressants du dernier ouvrage de Jürgen Habermas est sa tentative de reconnaître le problème de la complexité sociale tout en demeurant fidèle a I’idée centrale de la conception rousseauiste de légitimité démocratique. Cette dernière est fondée sur la participation du citoyen aux processus de formation de I’opinion publique et de la volonté populaire, qui seule peut assurer le caractère raisonnable des décisions collectives. Le défi que doit relever Habermas consiste à démontrer la possibilité de concilier les conséquences de la complexité sociale avec cette compréhension de la légitimité et de la souveraineté populaire. Peut-on considérer la tentative de Habermas comme un succès? Voilà la question qui sera abordée dans le présent article. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was carried out (...) at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

Citizens can be meaningfully involved in multiple phases of the urban planning process from decision-making to implementation via a dedicated online platform through which they can interact with planners and decision-makers. In historical contexts, local people are essential resources for decision-makers seeking critical local information needed for effective planning and intervention—including what those citizens recall from the past about the area’s social values and the built environment and what they imagine and hope for their neighborhood’s future. This public knowledge, collected (...) through storytelling and mapping, can play a fundamental role in shaping the framework for neighborhood rehabilitation plans. As a foundation for designing an online visual questionnaire to collect local knowledge and understand the views and expectations of local people, this study focuses on theoretical ideas to define a framework for an online visual questionnaire tool. The tool presented provides a common visual language that people can easily understand and use whatever their social class, education, or background. It also has the benefit of enabling citizens and planners to interact directly regardless of their geographical location. To proposing a framework for the online visual questionnaire, the first step was to review some existing visual tools and methods, including analog used for community engagement and digital used in urban planning to encourage and support public participation. Through an analysis of these methods, some important variables and criteria were identified that further our understanding of citizens’ perceptions of their neighborhoods. The next step, as part of a larger study, will be examining a historical public space, including a bazaar, hammam, and cistern—located in the historical context of Yazd— a central city in Iran registered as a cultural heritage site by UNESCO— as a case study with the larger goal of identifying some specific. (shrink)

Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. (...) Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account. (shrink)

The historical context of mental health care in Quebec, which in recent years has given way to greater client participation in the decision-making process for which they are concerned, has reversed the previous medical conception of psychiatry. From a vision of internment, care is now adapted to the individual needs of the clientele served, even including the provision of care in the home. However, work with people weakened by mental illness is often fraught with questions and sometimes contradictory ethical (...) issues. Intensive follow-up teams in the community are a case in point. Working with a very vulnerable clientele, health workers must know how to be open and flexible in order to establish a therapeutic relationship with a clientele that is often involuntary and refractory to any form of treatment. To achieve this, they often have to get past refusals to follow-up by using various strategies derived from libertarian paternalism in order to maintain contacts that will become meaningful and allow these individuals to regain control over their lives. This sometimes-intrusive approach obviously raises its share of ethical issues, particularly regarding consent to care, and can be perceived as an infringement of fundamental rights by infringing rights to self-determination and decision-making autonomy. However, it is possible to reverse this position through a benevolent approach supported by an ethics of care that favours respect for the uniqueness of each individual by placing them at the heart of the therapeutic relationship. It is through dialogue, the place given to the other, respect for their choices, uniqueness and self-determination that it will then be possible to seek implicit consent and active participation of the user in the recovery process, even if sometimes there are binding legal measures. (shrink)

The legitimacy of technology as a whole, of individual fields of technology, and of concrete decisions on technology has become problematic. Traditional methods and elements for the legitimization of technological development and of the application of technology have been increasingly called into question since the 1980s. There are great expectations in participatory procedures to improving the legitimization of technology decisions. Those expectations, however, might not be justified. In the paper, the hypothesis is proposed that legitimacy can be brought about through (...) participation only under conditions that require the fulfillment of a number of preconditions, which often cannot be regarded as fulfilled. The unavoidable separation between internal communication among the participants and external communication with the nonparticipants turns out to be the fundamental structural characteristic hindering naïve expectations of improving legitimacy by participation. (shrink)

Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build ‘true research teams’ (...) where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (shrink)

Les normes au sens le plus large sont issues des interactions entre les individus et sont interprétées au sein de ces interactions, même si la complexité des interactions tient aussi à l'intervention des institutions et des Etats. Il s'agit de partir du micronormatif pour aller vers le macronormatif (notamment les lois et les traités) et non l'inverse, de manière à rendre compte de phénomènes comme la responsabilité sociale des entreprises, le droit souple et la prise en compte de l'éthique pour (...) prendre des décisions (au plan national et international, en matière environnementale et médicale, etc.). Le constat de départ est qu'une masse colossale de normes de toute origine s'applique à des individus, personnes physiques ou morales, qui à leur tour participent de l'élaboration de normes. L'inflation et la diversification des normes engendrent notamment une crise du droit (en quête d'identité), mais aussi une crise des institutions et des professions judiciaires. Une façon de rendre compte de ces crises consiste à établir une sorte de cartographie des interactionnismes au regard des normes. Emergent ainsi des interactionnismes philosophiques, sociologiques, anthropologiques, psychologiques, éthiques ou juridiques. Les différents interactionnismes peuvent apparaître critiquables au regard des normes (notamment en raison de leur caractère descriptif et non institutionnel) et il serait fort utile de dégager des voies alternatives. L'introduction met en place cette problématique (E Picavet et E Jeuland). Après une recherche théorique et pratique menée par des juristes (E Jeuland et L Champain), un sociologue des professions (F Champy) nous permet de penser l'évolution des professions judiciaires entre statut et adaptation. Une philosophe spécialisée dans l'interactionnisme (C Bonicco) ainsi qu'une psychanalyste (H Tessier) s'interrogent sur les normes implicites, non dites et les rapports de domination sous-jacents aux interactions. Un philosophe spécialisé dans la justice climatique et le nucléaire ouvre un nouveau champ de réflexion particulièrement nécessaire aujourd'hui en incluant la nature au sein des interactions humaines (F P Piguet). Deux ingénieurs nous présentent une approche des interactionnismes et de l'innovation technologique (J F Omhover et C Bouchard) qui n'est pas sans lien avec la nature et le droit. Un anthropologue estime que le droit tel qu'il est connu depuis deux ou trois siècles dans une version très étatique est en plein bouleversement et revient à des formes microjuridiques (Etienne le Roy). Un juriste essaie enfin de faire la synthèse des articulations entre les normes et les interactions (J Moret-Bailly). Il en ressort une présentation transdisciplinaire des différents versants du problème de la relation entre les normes et les individus. (shrink)

Historically nurses have lacked significant input in end-of-life decision-making, despite being an integral part of care. Nurses experience negative feelings and moral conflict when forced to aggressively deliver care to patients at the EOL. As a result, nurses participate in slow codes, described as a limited resuscitation effort with no intended benefit of patient survival. The purpose of this study was to explore and understand the process nurses followed when making decisions about participation in limited resuscitation. Five core categories (...) emerged that describe this theory: (1) recognition of patient and family values at the EOL; (2) stretching time and reluctance in decision-making; (3) harm and suffering caused by the physical components of CPR; (4) nurse’s emotional and moral response to delivering aggressive care, and; (5) choosing limited resuscitation with or without a physician order. Several factors in end-of-life disputes contribute to negative feelings and moral distress driving some nurses to perform slow codes in order to preserve their own moral conflict, while other nurses refrain unless specifically ordered by physicians to provide limited care through tailored orders. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites (...) in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

This paper draws on research undertaken by the authors in community well woman clinics and hospital settings. Discussion focuses on issues around informed consent and participant observation. The authors are concerned to highlight the complexity of decision-making where researchers hold dual or multiple agendas, which are sometimes in conflict. Further situational factors which affect decision-making in research settings are explored. In particular, the complexity of gaining informed consent throughout the research process is addressed. The intention is not to point to (...) definitive resolutions to the problems posed, but rather to prompt debate about the often taken for granted meaning of 'informed' consent in relationship to participant observation. Cet article est basé sur les recherches que les auteurs avaient entrepris dans des polycliniques de santé de femmes et des hôpitaux. La discussion est concentré sur les thèmes du consentement informé et l'observation participante. Les auteurs sont inquiets de montrer la complexité du processus de se décider quant les chercheurs ont un rôle double ou multiple qui peut être en conflit. D'autres éléments qui influencent la prise de décisions dans des cadres de recherche sont aussi étudiés. En particulier, la compléxité de l'acquisition du consentement informé est adressée. L'intention n'est pas d'amener à une résolution définitive du problème posé, mais plutôt d'inviter á une discussion sur le sens (trop souvent pris pour réalité) du consentment 'informé' quant il s'agit de l'observation participante. Dieser Artikel stützt auf Forschungen, die die Autoren in Frauengesundheits-Kliniken und Spitälern unternommen hatten. Die Diskussion ist hier über die Themen Informierte Zustimmung und Mitteilende Beobachtung. Die Autoren befassen sich mit der Vielschichtigkeit der Entscheidungskräfte wenn die Forscher doppelte oder mehrfache Rollen haben, die manchmal im Konflikt sein können. Andere Faktoren, die die Entscheidungsmöglichkeit beeinflussen, sind auch untersucht. Besonders wird hier die Komplexität des erhalten von informierter Zustimmungung während des Forschungsprozesses angesprochen. Die Absicht ist nicht, eine definitive Lösung des Problems zu finden, sondern eher zu einer Debatte einzuladen über die zu oft als selbstverständlich betrachtete Bedeutung der 'informierten' Zustimmung auf der Ebene der mitteilenden Beobachtung. (shrink)

Générations futures, animaux, rivières, espèces, écosystèmes, œuvres d’art, androïdes. La liste des entités non-humaines (ou non-individuelles) aspirant à la personnalité juridique s’allonge. Un nombre croissant d’État leur attribuent des droits dans le but de les protéger, avec plus ou moins de succès, en tant qu’entité à part entière. L’article 71 de la Constitution de l’Équateur figure parmi les exemples les plus marquants puisqu’il fait de la Nature ( Pacha Mama ) un sujet de droits au nom desquels on compte le (...) droit au respect de son existence et le droit à la régénération de ses cycles vitaux. La vulnérabilité de ces entités non-humaines appelle une protection dépassant les intérêts individuels. Souvent dépourvues de la personnalité juridique, ces entités ne peuvent pas agir en justice par elles-mêmes. Leurs intérêts, bien que de plus en plus protégés par les normes juridiques, demeurent partiellement défendus par l’appareil juridictionnel. Au-delà de la résistance de nos imaginaires politiques, cela s’explique par la difficulté théorique et pratique d’ouvrir l’accès au prétoire à des requérants agissant au nom d’autrui, en l’occurrence de ces entités. Ce sont les obstacles juridiques que nous tentons ici de lever. Le principe Nul ne plaide par procureur interdit à toute personne d’agir en défense d’un droit subjectif qui ne lui appartiendrait pas en propre, sans requérir un mandat de représentation du bénéficiaire du droit. L’intérêt pour agir que l’on présente comme la condition sine qua non de recevabilité de l’action se caractérise, en substance, par l’intérêt lésé du requérant. Les actions en justice dans l’intérêt d’autrui ne sont admises que par exception et sans que les concepts doctrinaux ne les embrassent pleinement. L’action en justice tout autant que la protection juridique des intérêts ont été pensées presque exclusivement par le prisme des intérêts et des besoins humains et individuels. La reconnaissance de droits aux non-humains rebat les cartes du droit processuel. Il faut repenser l’intérêt à agir comme condition de recevabilité susceptible d’être caractérisée par une motivation du requérant qui puisse être autre que la lésion de son propre droit. Il faut élargir la catégorie des bénéficiaires de droit aux entités, quelles qu’elles soient, dont les intérêts sont objectivement protégés par des normes juridiques. Il faut concevoir l’action en justice comme subordonnées non pas à un intérêt personnel du requérant mais à une norme d’habilitation dont le contenu est laissé à la décision des autorités normatives. Les voies processuelles peuvent accueillir une grande diversité de configurations. Il appartient à la sphère politique de pondérer la nécessité de garantir les droits sans encourager l’engorgement du prétoire. Toutefois, intégré au sein de ce que l’on appelle les « grandes causes », le contentieux des droits des non-humains participe à la transformation du rôle la justice dans nos systèmes. En dépassant le règlement des conflits individuels, elle doit aujourd’hui se prononcer sur des questions qui sont habituellement discutées au sein des arènes démocratiques ( cause lawyering ). JEL Codes : K380, K410. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Cet article a pour but d’expliquer en quoi l’urgence écologique nous impose de repenser le rapport de la démocratie aux territoires. Nos institutions politiques (internationales, nationales, locales) ne se montrent pas capables de faire face aux crises écologiques actuelles (climat, eau, biodiversité, approvisionnement énergétique). Or la solution n’est pas de valoriser l’échelon local au détriment du global en reconduisant les topoi philosophiques vantant les petites républiques ou promouvant la participation, mais de prendre les décisions adéquates à l’échelle pertinente. (...) La capacité d’ajustement spatiale et temporelle de la démocratie pourrait définir le principe de nouvelles institutions. (shrink)

Le thème de l’argent est loin d’être anodin pour les usagers comme pour les professionnels du secteur médico-social. Certes, il n’y a pas de manipulation d’argent entre le service éducatif et soignant et ses bénéficiaires ; la Sécurité sociale assujettie à la décision de la MDPH (maison départementale pour la personne handicapée) prend en charge la quasi-totalité des frais afférents aux prestations proposées par le service. Pourtant, à travers des attitudes, des remarques, des évitements, on perçoit combien la « gratuité (...) symbolique de l’aide ou du soin » accompagne les familles tout au long de la prise en charge. S’ensuit un sentiment de culpabilité qui peut être travaillé au niveau d’une prise en charge thérapeutique mais aussi à travers la participation au projet institutionnel, comme les derniers textes de lois nous y invitent. (shrink)