L'observation sur une période de deux ans d'une équipe d'hospitalisation pédiatrique à domicile montre la manière dont les infirmières travaillent en se coordonnant avec les parents. C'est moins un envahissement du domicile par le médical que l'on observe en hospitalisation pédiatrique à domicile, qu'un enrôlement des parents dans les soins, que ce soit pour assister les infirmières qui se trouvent seules en visite, ou pour permettre aux parents de gagner en autonomie dans la réalisation des soins. Les parents sont alors amenés à occuper une posture délicate de « soignant » de leur propre enfant, y compris pour des gestes invasifs suscitant de l'inconfort. Le transfert du travail de soin vers les parents permet aux infirmières de se retirer à petits pas, tout en offrant aux parents un contrôle sur la trajectoire médicale de leur enfant.
Que font les infirmières en hospitalisation pédiatrique à domicile des inégalités entre enfants ? Une enquête ethnographique auprès de professionnelles d'une unité d'hospitalisation à domicile pédiatrique de la région Île-de-France apporte un éclairage sur cette question. L'observation de leur travail au domicile des familles montre qu'elles accordent peu d'importance à l'environnement matériel des enfants malades, malgré l'absence de lit médicalisé qui les conduit à travailler dans les lieux du quotidien. Ces professionnelles s'attachent davantage à la « qualité » des relations parents-enfants, caractéristique qui traverse les frontières entre les classes sociales sans les abolir. Elles parviennent ainsi à nouer des relations positives avec des parents situés aux extrêmes de l'échelle sociale.
Generalized since the 1980s, the policy of opening pediatric units allowed the gradual affirmation of a "right of access" of parents to the hospital. After studying the historical foundations of this policy and highlighting the importance of psychological knowledge in its development, its consequences on the functioning of hospital services and family dynamics were apprehended. The direct observation survey in two departments, one of general pediatrics, the other specialized in liver transplants, was aimed at providing a "bottom-line" analysis of the hospital institution, by being as close to interactions between parents, children and caregivers as possible. The aim was to propose a microsociological approach to relations between the private sphere and the public sphere, by clarifying the place of the pediatric segment in the regulation of the contemporary family. The field survey identified two parental presence regimens, a visitation regime, and a continuous presence regime, with parents' "duty of presence" at the hospital having the effect of reinforcing maternal pre-eminence in the family. care of the child. It highlights the way in which parents come to join the division of hospital work, according to a double logic of delegation and reappropriation of care. "Ankle-Worker" of humanization policies and accelerating factor of the hospital trajectory of the child, parents are not content, however, to be auxiliaries of caregivers. Their control over care can become a source of tension in their relationships with hospital staff who, in turn, exercise control over parenting practices and allow themselves to intervene when parents move away from the contemporary norms of exercise of parenting. ; Généralisée à partir des années 1980, la politique d'ouverture des services pédiatriques a permis l'affirmation progressive d'un « droit de visite » des parents à l'hôpital. Après avoir étudié les fondements historiques de cette politique et mis en lumière l'importance des savoirs psychologiques dans son élaboration, ses conséquences sur le fonctionnement des services hospitaliers et la dynamique familiale ont été appréhendées. L'enquête par observation directe dans deux services, l'un de pédiatrie générale, l'autre spécialisé dans les greffes de foie, visait à proposer une analyse « par le bas » de l'institution hospitalière, en se situant au plus près des interactions entre parents, enfants et soignants. Il s'agissait ainsi de proposer un abord microsociologique des relations entre sphère privée et sphère publique, en éclairant la place du segment pédiatrique dans la régulation de la famille contemporaine. L'enquête de terrain a permis d'identifier, deux régimes de présence parentale, un régime de visites et un régime de présence continue, le « devoir de présence » des parents à l'hôpital ayant eu pour effet de renforcer la prééminence maternelle dans les soins à l'enfant. Elle met en évidence la manière dont les parents viennent s'inscrire dans la division du travail hospitalier, selon une double logique de délégation et de réappropriation des soins. « Cheville ouvrière » des politiques d'humanisation et facteur d'accélération de la trajectoire hospitalière de l'enfant, les parents ne se contentent pas cependant d'être des auxiliaires des soignants. Le contrôle qu'ils exercent sur les soins peut devenir une source de tensions dans leurs relations avec le personnel hospitalier qui exerce en retour un contrôle sur les pratiques parentales et s'autorise à intervenir lorsque les parents s'éloignent des normes contemporaines qui encadrent l'exercice de la parentalité.
Generalized since the 1980s, the policy of opening pediatric units allowed the gradual affirmation of a "right of access" of parents to the hospital. After studying the historical foundations of this policy and highlighting the importance of psychological knowledge in its development, its consequences on the functioning of hospital services and family dynamics were apprehended. The direct observation survey in two departments, one of general pediatrics, the other specialized in liver transplants, was aimed at providing a "bottom-line" analysis of the hospital institution, by being as close to interactions between parents, children and caregivers as possible. The aim was to propose a microsociological approach to relations between the private sphere and the public sphere, by clarifying the place of the pediatric segment in the regulation of the contemporary family. The field survey identified two parental presence regimens, a visitation regime, and a continuous presence regime, with parents' "duty of presence" at the hospital having the effect of reinforcing maternal pre-eminence in the family. care of the child. It highlights the way in which parents come to join the division of hospital work, according to a double logic of delegation and reappropriation of care. "Ankle-Worker" of humanization policies and accelerating factor of the hospital trajectory of the child, parents are not content, however, to be auxiliaries of caregivers. Their control over care can become a source of tension in their relationships with hospital staff who, in turn, exercise control over parenting practices and allow themselves to intervene when parents move away from the contemporary norms of exercise of parenting. ; Généralisée à partir des années 1980, la politique d'ouverture des services pédiatriques a permis l'affirmation progressive d'un « droit de visite » des parents à l'hôpital. Après avoir étudié les fondements historiques de cette politique et mis en lumière l'importance des savoirs psychologiques dans son élaboration, ses conséquences sur le fonctionnement des services hospitaliers et la dynamique familiale ont été appréhendées. L'enquête par observation directe dans deux services, l'un de pédiatrie générale, l'autre spécialisé dans les greffes de foie, visait à proposer une analyse « par le bas » de l'institution hospitalière, en se situant au plus près des interactions entre parents, enfants et soignants. Il s'agissait ainsi de proposer un abord microsociologique des relations entre sphère privée et sphère publique, en éclairant la place du segment pédiatrique dans la régulation de la famille contemporaine. L'enquête de terrain a permis d'identifier, deux régimes de présence parentale, un régime de visites et un régime de présence continue, le « devoir de présence » des parents à l'hôpital ayant eu pour effet de renforcer la prééminence maternelle dans les soins à l'enfant. Elle met en évidence la manière dont les parents viennent s'inscrire dans la division du travail hospitalier, selon une double logique de délégation et de réappropriation des soins. « Cheville ouvrière » des politiques d'humanisation et facteur d'accélération de la trajectoire hospitalière de l'enfant, les parents ne se contentent pas cependant d'être des auxiliaires des soignants. Le contrôle qu'ils exercent sur les soins peut devenir une source de tensions dans leurs relations avec le personnel hospitalier qui exerce en retour un contrôle sur les pratiques parentales et s'autorise à intervenir lorsque les parents s'éloignent des normes contemporaines qui encadrent l'exercice de la parentalité.
Generalized since the 1980s, the policy of opening pediatric units allowed the gradual affirmation of a "right of access" of parents to the hospital. After studying the historical foundations of this policy and highlighting the importance of psychological knowledge in its development, its consequences on the functioning of hospital services and family dynamics were apprehended. The direct observation survey in two departments, one of general pediatrics, the other specialized in liver transplants, was aimed at providing a "bottom-line" analysis of the hospital institution, by being as close to interactions between parents, children and caregivers as possible. The aim was to propose a microsociological approach to relations between the private sphere and the public sphere, by clarifying the place of the pediatric segment in the regulation of the contemporary family. The field survey identified two parental presence regimens, a visitation regime, and a continuous presence regime, with parents' "duty of presence" at the hospital having the effect of reinforcing maternal pre-eminence in the family. care of the child. It highlights the way in which parents come to join the division of hospital work, according to a double logic of delegation and reappropriation of care. "Ankle-Worker" of humanization policies and accelerating factor of the hospital trajectory of the child, parents are not content, however, to be auxiliaries of caregivers. Their control over care can become a source of tension in their relationships with hospital staff who, in turn, exercise control over parenting practices and allow themselves to intervene when parents move away from the contemporary norms of exercise of parenting. ; Généralisée à partir des années 1980, la politique d'ouverture des services pédiatriques a permis l'affirmation progressive d'un « droit de visite » des parents à l'hôpital. Après avoir étudié les fondements historiques de cette politique et mis en lumière l'importance des savoirs psychologiques dans son élaboration, ses ...
The purpose of this article is to describe the subjective experience of the diagnosis of Attention Defi ci t and Hyperacti vi ty Di sorder (ADHD) and the cul tural meani ngs that shape thi s experience. Based on interviews and discussion groups with diagnosed people and their families in Chil e and France, this articl e show that ADHD can acquire multiple meanings. From a thematic analysis, we identified three registers or ways of living and thinking about ADHD. In the deficit register, the disorder is experienced primarily as a failure of certain abilities. In the disruption register, the disorder is experienced as disrupting the person's life, personality and interactions, which must then be normalized. In the register of hidden potential, on which this article focuses, ADHD is simultaneously thought of as a difficult and valuable condition, a source of exceptional capacities that are often hidden in the ordinary functioning of social life. We therefore invite reflection that identifies the factors of mobilization or non-mobilization of the hidden potential register, with particular emphasis not only on relational configurations, socio-economic variables, and the gender variable, but also on the institutional and political context of each country. ; O objetivo deste artigo é descrever a experiência subjetiva do diagnóstico de Transtorno do Déficit de Atenção com Hiperatividade (TDAH) e os significados culturais que moldam essa experiência. Com base em entrevistas e grupos de discussão com pessoas diagnosticadas e suas famílias no Chile e na França, este artigo demonstra que diversos significados podem ser atribuídos ao TDAH. A partir de análise temática, foram identificados três registros ou modos de viver e pensar TDAH. No registro déficit, o transtorno é vivenciado primariamente como falha de certas habilidades. No registro distúrbio, o transtorno é vivenciado como uma perturbação da vida pessoal, personalidade e interações que necessita ser normalizada. No registro de potencial oculto, foco deste artigo, TDAH é considerado simultaneamente condição difícil e valiosa, fonte de capacidades excepcionais que estão habitualmente ocultas no andamento comum da vida social. Portanto, propõe-se refletir e identificar os fatores de mobilização e não mobilização do registro de potencial oculto, com particular ênfase não só nas configurações relacionais, variáveis socioeconômicas e de gênero, mas também no contexto institucional e político de cada país.
The purpose of this article is to describe the subjective experience of the diagnosis of Attention Deficit and Hyperactivity Disorder (ADHD) and the cultural meanings that shape this experience. Based on interviews and discussion groups with diagnosed people and their families in Chile and France, this article show that ADHD can acquire multiple meanings. From a thematic analysis, we identified three registers or ways of living and thinking about ADHD. In the deficit register, the disorder is experienced primarily as a failure of certain abilities. In the disruption register, the disorder is experienced as disrupting the person's life, personality and interactions, which must then be normalized. In the register of hidden potential, on which this article focuses, ADHD is simultaneously thought of as a difficult and valuable condition, a source of exceptional capacities that are often hidden in the ordinary functioning of social life. We therefore invite reflection that identifies the factors of mobilization or non-mobilization of the hidden potential register, with particular emphasis not only on relational configurations, socio-economic variables, and the gender variable, but also on the institutional and political context of each country.
Abstract The purpose of this article is to describe the subjective experience of the diagnosis of Attention Deficit and Hyperactivity Disorder (ADHD) and the cultural meanings that shape this experience. Based on interviews and discussion groups with diagnosed people and their families in Chile and France, this article show that ADHD can acquire multiple meanings. From a thematic analysis, we identified three registers or ways of living and thinking about ADHD. In the deficit register, the disorder is experienced primarily as a failure of certain abilities. In the disruption register, the disorder is experienced as disrupting the person's life, personality and interactions, which must then be normalized. In the register of hidden potential, on which this article focuses, ADHD is simultaneously thought of as a difficult and valuable condition, a source of exceptional capacities that are often hidden in the ordinary functioning of social life. We therefore invite reflection that identifies the factors of mobilization or non-mobilization of the hidden potential register, with particular emphasis not only on relational configurations, socio-economic variables, and the gender variable, but also on the institutional and political context of each country.
