{"id":16491,"date":"2024-02-13T18:28:52","date_gmt":"2024-02-13T17:28:52","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=16491"},"modified":"2024-09-10T18:30:31","modified_gmt":"2024-09-10T16:30:31","slug":"comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/","title":{"rendered":"Comprendre l\u2019exp\u00e9rience des mamans \u00e0 travers une analyse de leurs r\u00e9cits"},"content":{"rendered":"<p>Une \u00e9tude vient d\u2019\u00eatre publi\u00e9e dans \u00ab\u00a0<em>Recherche Qualitative en Sant\u00e9\u00a0\u00bb. <\/em>M\u00eame si cette \u00e9tude est faite pour le Syndrome de Prader Willy, les r\u00e9sultats et recommandations qui en sont issus peuvent \u00eatre appliqu\u00e9s \u00e0 toute maladie rare. Les chercheurs ont identifi\u00e9 des th\u00e8mes cibl\u00e9s sur la complexit\u00e9 et la raret\u00e9 de la maladie, y compris le d\u00e9sir d\u2019\u00eatre normal, comment l\u2019ordinaire devient extraordinaire, l\u2019isolement, les comportements et standards normatifs, ainsi que ce que disent les mamans des choix qu\u2019elles doivent faire. Bas\u00e9s sur ces r\u00e9sultats, quatre recommandations cl\u00e9s ont pu \u00eatre \u00e9tablies\u00a0:<\/p>\n<ul>\n<li>Reconna\u00eetre les d\u00e9fis qu\u2019affrontent les mamans d\u2019enfant ayant une maladie complexe\u00a0;<\/li>\n<li>Aller au-del\u00e0 de la fonctionnalit\u00e9 et de l\u2019incapacit\u00e9 pour atteindre la participation et la qualit\u00e9 de vie\u00a0;<\/li>\n<li>Reconsid\u00e9rer les r\u00e9cits et les soutiens aux familles<\/li>\n<li>Faire collaborer les mamans pour d\u00e9terminer les priorit\u00e9s de soins.<\/li>\n<\/ul>\n<p>Les r\u00e9sultats de cette \u00e9tude mettent en lumi\u00e8re combien des m\u00e9thodes de recherche plus qualitative\u00a0 telles que l\u2019analyse de r\u00e9cits peuvent \u00eatre utilis\u00e9es dans la recherche sur les maladies rares afin d\u2019identifier les priorit\u00e9s de soins et de r\u00e9glementation pour am\u00e9liorer la vie des personnes vivant avec une maladie rare et leurs familles.<\/p>\n<p><em>(orphanews international 2024.02.13)<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Une \u00e9tude vient d\u2019\u00eatre publi\u00e9e dans \u00ab\u00a0Recherche Qualitative en Sant\u00e9\u00a0\u00bb. M\u00eame si cette \u00e9tude est faite pour le Syndrome de Prader Willy, les r\u00e9sultats et recommandations qui en sont issus peuvent \u00eatre appliqu\u00e9s \u00e0 toute maladie rare. Les chercheurs ont identifi\u00e9 des th\u00e8mes cibl\u00e9s sur la complexit\u00e9 et la raret\u00e9 de la maladie, y compris [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":16487,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61,60,66],"tags":[],"class_list":["post-16491","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-legislation-society-fr","category-quoi-de-neuf","category-recherche","category-recherche-medecine-genetique"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Comprendre l\u2019exp\u00e9rience des mamans \u00e0 travers une analyse de leurs r\u00e9cits - CUTIS LAXA INTERNATIONALE<\/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.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Comprendre l\u2019exp\u00e9rience des mamans \u00e0 travers une analyse de leurs r\u00e9cits - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Une \u00e9tude vient d\u2019\u00eatre publi\u00e9e dans \u00ab\u00a0Recherche Qualitative en Sant\u00e9\u00a0\u00bb. M\u00eame si cette \u00e9tude est faite pour le Syndrome de Prader Willy, les r\u00e9sultats et recommandations qui en sont issus peuvent \u00eatre appliqu\u00e9s \u00e0 toute maladie rare. Les chercheurs ont identifi\u00e9 des th\u00e8mes cibl\u00e9s sur la complexit\u00e9 et la raret\u00e9 de la maladie, y compris [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:published_time\" content=\"2024-02-13T17:28:52+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-09-10T16:30:31+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/09\/mother-and-baby-7375170_1280.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"645\" \/>\n\t<meta property=\"og:image:height\" content=\"853\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Marie-Claude\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"Comprendre l\u2019exp\u00e9rience des mamans \u00e0 travers une analyse de leurs r\u00e9cits\",\"datePublished\":\"2024-02-13T17:28:52+00:00\",\"dateModified\":\"2024-09-10T16:30:31+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/comprendre-lexperience-des-mamans-a-travers-une-analyse-de-leurs-recits\/\"},\"wordCount\":239,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"L\u00e9gislation - 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