{"id":15969,"date":"2020-12-19T13:12:39","date_gmt":"2020-12-19T12:12:39","guid":{"rendered":"https:\/\/wordpress-test.app.u-pariscite.fr\/la-personne-en-medecine\/?p=15969"},"modified":"2023-01-04T12:25:29","modified_gmt":"2023-01-04T11:25:29","slug":"lexperience-de-la-maladie-de-lenfant-et-de-ladolescent-entre-medecine-pediatrique-et-medecine-dadultes","status":"publish","type":"post","link":"https:\/\/wordpress-test.app.u-pariscite.fr\/la-personne-en-medecine\/lexperience-de-la-maladie-de-lenfant-et-de-ladolescent-entre-medecine-pediatrique-et-medecine-dadultes\/","title":{"rendered":"L\u2019exp\u00e9rience de la maladie de l\u2019enfant et de l\u2019adolescent entre m\u00e9decine p\u00e9diatrique et m\u00e9decine d\u2019adultes"},"content":{"rendered":"

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En septembre 2012 K.L Schwering et F. Villa ont obtenu un financement de l\u2019INCA pour d\u00e9velopper un programme de recherche portant sur \u00ab l\u2019ajustement psychosocial et la construction identitaire chez les adolescents et jeunes adultes atteints de leuc\u00e9mie \u00bb. Ce programme se d\u00e9ploie \u00e0 l\u2019unit\u00e9 AJA (adolescents et jeunes adultes) de l\u2019h\u00f4pital St. Louis dirig\u00e9e par N. Boissel. Au total 4 th\u00e8ses de doctorat en psychopathologie et psychanalyse ont pu \u00eatre men\u00e9es dans ce contexte. L\u2019ensemble du programme de recherche s\u2019est construit sur une m\u00e9thodologie qualitative\u00a0grounded theory<\/em>\u00a0bas\u00e9e sur des entretiens men\u00e9s avec le personnel soignant et les patients et patientes. Le volet \u00ab soignants \u00bb vise \u00e0 d\u00e9gager les sp\u00e9cificit\u00e9s du soin \u00e0 la fois technique et psychique apport\u00e9 aux AJA. Le volet \u00ab patients \u00bb a pour objectif d\u2019\u00e9tudier la construction identitaire des AJA confront\u00e9s \u00e0 l\u2019exp\u00e9rience du cancer, de la greffe de mo\u00eblle osseuse, et pour certaines de la r\u00e9implantation du cortex ovarien.<\/p>\n<\/div>\n<\/div>\n<\/div>\n

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Le Centre a pour principal objet la prise en charge des patients greff\u00e9s ou en attente de greffe h\u00e9patique et de leur entourage et il r\u00e9pond \u00e0 des enjeux essentiels de d\u00e9mocratie sanitaire. Il vise \u00e0 mieux comprendre et \u00e0 r\u00e9pondre aux besoins concrets des patients et de leur entourage en termes d\u2019information (m\u00e9dicale, psycho-sociale, juridique et \u00e9thique) et en termes d\u2019accompagnement afin d\u2019am\u00e9liorer la qualit\u00e9 des soins. Il a aussi pour ambition de mieux conna\u00eetre les conceptions du don et les valeurs \u00e9thiques des patients et de leur entourage afin d\u2019am\u00e9liorer l\u2019encadrement \u00e9thique et juridique, les politiques de sant\u00e9 et les pratiques m\u00e9dicales autour de la greffe. Il contribue \u00e0 mieux former les professionnels.
Il se situe dans le courant des recherches-actions, c\u2019est-\u00e0-dire des recherches qui visent l\u2019implication des acteurs comme sujets (et non comme objets) dans la production des connaissances sur les pratiques.
L\u2019ERI a \u00e9t\u00e9 co-financ\u00e9 par l\u2019Institut la Personne en m\u00e9decine et par la Ville de Paris dans le cadre du projet \u00ab Emergence \u00bb.<\/p>\n

Cette recherche a donn\u00e9 lieu \u00e0 plusieurs r\u00e9alisations :<\/p>\n