{"id":16043,"date":"2023-10-16T18:19:35","date_gmt":"2023-10-16T16:19:35","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=16043"},"modified":"2024-02-19T18:21:02","modified_gmt":"2024-02-19T17:21:02","slug":"las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/","title":{"rendered":"Las necesidades psicosociales de los ni\u00f1os con enfermedades raras y sus familias"},"content":{"rendered":"<p>un nuevo art\u00edculo publicado en el <em>\u00abOrphanet Journal of Rare Disorders\u00bb<\/em> explora la vida cotidiana de los ni\u00f1os con enfermedades raras y sus padres en el contexto de apoyos psicosociales que necesitan.<\/p>\n<p>Durante entrevistas semiestructuradas con ni\u00f1os y padres de ni\u00f1os con enfermedades raras, surgieron cinco temas principales: la vida diaria con una enfermedad rara; experiencias con el sistema de salud; apoyo psicosocial; dificultades y barreras; y mejoras necesarias para el apoyo centrado en el paciente.<\/p>\n<p>En general, los retrasos en el diagn\u00f3stico, la falta de formaci\u00f3n de los m\u00e9dicos, as\u00ed como los problemas de organizaci\u00f3n, tiempo y apoyo preventivo provocan estr\u00e9s y afectan negativamente al bienestar mental.<\/p>\n<p>A pesar de los recientes avances en concientizaci\u00f3n y tratamiento, las Enfermedades Raras todav\u00eda representan un desaf\u00edo para los afectados y sus familias.<\/p>\n<p>(Orphanews International 2023.10.16)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>un nuevo art\u00edculo publicado en el \u00abOrphanet Journal of Rare Disorders\u00bb explora la vida cotidiana de los ni\u00f1os con enfermedades raras y sus padres en el contexto de apoyos psicosociales que necesitan. Durante entrevistas semiestructuradas con ni\u00f1os y padres de ni\u00f1os con enfermedades raras, surgieron cinco temas principales: la vida diaria con una enfermedad rara; [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":16036,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[79,80,76],"tags":[],"class_list":["post-16043","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-investigacion-medicina-genetica","category-legislacion-sociedad","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Las necesidades psicosociales de los ni\u00f1os con enfermedades raras y sus familias - 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\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Las necesidades psicosociales de los ni\u00f1os con enfermedades raras y sus familias - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"un nuevo art\u00edculo publicado en el \u00abOrphanet Journal of Rare Disorders\u00bb explora la vida cotidiana de los ni\u00f1os con enfermedades raras y sus padres en el contexto de apoyos psicosociales que necesitan. Durante entrevistas semiestructuradas con ni\u00f1os y padres de ni\u00f1os con enfermedades raras, surgieron cinco temas principales: la vida diaria con una enfermedad rara; [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/\" \/>\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=\"2023-10-16T16:19:35+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-02-19T17:21:02+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=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"Las necesidades psicosociales de los ni\u00f1os con enfermedades raras y sus familias\",\"datePublished\":\"2023-10-16T16:19:35+00:00\",\"dateModified\":\"2024-02-19T17:21:02+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/es\/las-necesidades-psicosociales-de-los-ninos-con-enfermedades-raras-y-sus-familias\/\"},\"wordCount\":158,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"Investigaci\u00f3n- Medicina - 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