{"id":1807,"date":"2021-04-02T11:51:29","date_gmt":"2021-04-02T09:51:29","guid":{"rendered":"https:\/\/www.institut-myologie.org\/imotion\/?p=1807"},"modified":"2021-04-02T12:37:11","modified_gmt":"2021-04-02T10:37:11","slug":"sma-focus-sur-letude-sma-par-menee-par-sophie-boursange-psychyologue-a-i-motion-une-etude-de-lexperience-de-la-parentalite-de-parents-denfants-atteints-dune-am","status":"publish","type":"post","link":"https:\/\/www.institut-myologie.org\/imotion\/2021\/04\/02\/sma-focus-sur-letude-sma-par-menee-par-sophie-boursange-psychyologue-a-i-motion-une-etude-de-lexperience-de-la-parentalite-de-parents-denfants-atteints-dune-am\/","title":{"rendered":"SMA-PAR, une \u00e9tude de l\u2019exp\u00e9rience de la parentalit\u00e9 de parents d\u2019enfants atteints de SMA men\u00e9e par Sophie Boursange"},"content":{"rendered":"

\"\"Sophie Boursange, psychologue \u00e0 I-Motion, r\u00e9alise actuellement au sein du service une recherche en sciences humaines et sociales, sous la direction du Pr. M. Gargiulo, psychologue clinicienne et Professeur en psychologie \u00e0 l\u2019Universit\u00e9 de Paris.<\/p>\n

Cette recherche vise \u00e0 d\u00e9crire l\u2019exp\u00e9rience subjective des parents et \u00e0 analyser l\u2019impact de la maladie sur la vie familiale et quotidienne dans un environnement th\u00e9rapeutique en totale mutation. L\u2019objectif de cette recherche est de mieux comprendre les besoins des familles et d\u2019am\u00e9liorer l\u2019accompagnement qui leur est propos\u00e9.<\/p>\n

Ce projet est le fruit d\u2019une collaboration pluridisciplinaire entre des universitaires, les consultations de neurop\u00e9diatrie de Necker Enfants Malades, Trousseau, I-Motion, Garches, la clinique Las Condes au Chili et les associations de patients (groupe d\u2019int\u00e9r\u00eat SMA de l\u2019AFM-T\u00e9l\u00e9thon et association Eclas).\u00a0<\/span><\/p>\n

Il b\u00e9n\u00e9ficie du soutien financier de l\u2019Universit\u00e9 de Paris et de la Fondation Maladies Rares, et du soutien institutionnel des laboratoires Roche et du r\u00e9seau Filnemus.<\/p>\n

Une soixante de parents d\u2019enfants atteints d\u2019un des 3 types de SMA<\/a>, trait\u00e9s ou non, sont actuellement en cours de recrutement pour participer \u00e0 cette recherche dans toute la France.<\/p>\n

Si vous souhaitez participer ou avoir des informations, vous pouvez contacter Mme Boursange par mail\u00a0: recherche_sma_par@outlook.fr<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Sophie Boursange, psychologue \u00e0 I-Motion, r\u00e9alise actuellement au sein du service une recherche en sciences humaines et sociales, sous la direction du Pr. M. Gargiulo, psychologue clinicienne et Professeur en psychologie \u00e0 l\u2019Universit\u00e9 de Paris. Cette recherche vise \u00e0 d\u00e9crire l\u2019exp\u00e9rience subjective des parents et \u00e0 analyser l\u2019impact de la maladie sur la vie familiale … Continued<\/a><\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6],"tags":[],"class_list":["post-1807","post","type-post","status-publish","format-standard","hentry","category-actualites-recherche"],"acf":[],"yoast_head":"\nSMA-PAR, une \u00e9tude de l\u2019exp\u00e9rience de la parentalit\u00e9 de parents d\u2019enfants atteints de SMA men\u00e9e par Sophie Boursange - I-Motion<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.institut-myologie.org\/imotion\/2021\/04\/02\/sma-focus-sur-letude-sma-par-menee-par-sophie-boursange-psychyologue-a-i-motion-une-etude-de-lexperience-de-la-parentalite-de-parents-denfants-atteints-dune-am\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SMA-PAR, une \u00e9tude de l\u2019exp\u00e9rience de la parentalit\u00e9 de parents d\u2019enfants atteints de SMA men\u00e9e par Sophie Boursange - I-Motion\" \/>\n<meta property=\"og:description\" content=\"Sophie Boursange, psychologue \u00e0 I-Motion, r\u00e9alise actuellement au sein du service une recherche en sciences humaines et sociales, sous la direction du Pr. 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