{"id":16039,"date":"2023-10-16T18:16:31","date_gmt":"2023-10-16T16:16:31","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=16039"},"modified":"2024-02-19T18:18:22","modified_gmt":"2024-02-19T17:18:22","slug":"les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/","title":{"rendered":"Les besoins psychosociaux des enfants atteints de maladies rares et leurs familles"},"content":{"rendered":"<p>Un nouvel article publi\u00e9 dans le <em>\u00ab\u00a0Orphanet Journal of Rare Disorders\u00a0\u00bb<\/em> explore jour apr\u00e8s jour la vie des enfants atteints de maladies rares et de leurs parents dans le cadre des soutiens psychosociaux dont ils ont besoin.<\/p>\n<p>Lors d\u2019interviews semi-dirig\u00e9s avec des enfants et des parents d\u2019enfants atteints de maladies rares, 5 th\u00e8mes majeurs sont ressortis : la vie quotidienne avec une maladie rare ; les exp\u00e9riences avec le syst\u00e8me de sant\u00e9 ; le soutien psychosocial ; les difficult\u00e9s et les barri\u00e8res ; et les am\u00e9liorations n\u00e9cessaires pour un soutien centr\u00e9 sur le patient.<\/p>\n<p>Dans l\u2019ensemble, les retards de diagnostic, le manque de formation des m\u00e9decins, tout comme les probl\u00e8mes organisationnels, de temps et de soutien pr\u00e9ventif causent du stress et affectent n\u00e9gativement le bien-\u00eatre mental.<\/p>\n<p>Malgr\u00e9 de r\u00e9centes avanc\u00e9es dans la sensibilisation et la prise en charge, les Maladies Rares constituent toujours un challenge pour ceux qui en sont atteints et leurs familles.<\/p>\n<p>(Orphanews International 2023.10.16)<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Un nouvel article publi\u00e9 dans le \u00ab\u00a0Orphanet Journal of Rare Disorders\u00a0\u00bb explore jour apr\u00e8s jour la vie des enfants atteints de maladies rares et de leurs parents dans le cadre des soutiens psychosociaux dont ils ont besoin. Lors d\u2019interviews semi-dirig\u00e9s avec des enfants et des parents d\u2019enfants atteints de maladies rares, 5 th\u00e8mes majeurs sont [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":16035,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61,66],"tags":[],"class_list":["post-16039","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-legislation-society-fr","category-quoi-de-neuf","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>Les besoins psychosociaux des enfants atteints de maladies rares et leurs familles - 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\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Les besoins psychosociaux des enfants atteints de maladies rares et leurs familles - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Un nouvel article publi\u00e9 dans le \u00ab\u00a0Orphanet Journal of Rare Disorders\u00a0\u00bb explore jour apr\u00e8s jour la vie des enfants atteints de maladies rares et de leurs parents dans le cadre des soutiens psychosociaux dont ils ont besoin. Lors d\u2019interviews semi-dirig\u00e9s avec des enfants et des parents d\u2019enfants atteints de maladies rares, 5 th\u00e8mes majeurs sont [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/\" \/>\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=\"2023-10-16T16:16:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-02-19T17:18:22+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2024\/02\/Logo-Orphanews.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"163\" \/>\n\t<meta property=\"og:image:height\" content=\"48\" \/>\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=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"Les besoins psychosociaux des enfants atteints de maladies rares et leurs familles\",\"datePublished\":\"2023-10-16T16:16:31+00:00\",\"dateModified\":\"2024-02-19T17:18:22+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/les-besoins-psychosociaux-des-enfants-atteints-de-maladies-rares-et-leurs-familles\/\"},\"wordCount\":182,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"L\u00e9gislation - 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