{"id":9156,"date":"2026-11-05T11:49:09","date_gmt":"2026-11-05T10:49:09","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=9156"},"modified":"2026-11-05T11:49:10","modified_gmt":"2026-11-05T10:49:10","slug":"vivre-avec-lancement-dune-nouvelle-consultation","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2026\/11\/05\/vivre-avec-lancement-dune-nouvelle-consultation\/","title":{"rendered":"\u00ab Vivre avec \u00bb : lancement d&#8217;une nouvelle consultation"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>Cinq ans apr\u00e8s la premi\u00e8re \u00e9dition de l&#8217;enqu\u00eate \u00ab Vivre avec le Chiari ou la syringomy\u00e9lie \u00bb, APAISER S&amp;C lance quatre nouveaux questionnaires pour mieux comprendre l&#8217;impact de la maladie sur votre quotidien. Douleurs, enfance, accompagnement d\u2019un enfant malade et vie apr\u00e8s le diagnostic : la d\u00e9marche explore les exp\u00e9riences des personnes concern\u00e9es et de leurs proches.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L&#8217;enqu\u00eate &#8220;Vivre avec&#8221; visait \u00e0 objectiver les cons\u00e9quences de la maladie sur la qualit\u00e9 de vie des patients et de leurs aidants. Cette nouvelle salve de questionnaires poursuit cette ambition en approfondissant quatre sujets d\u00e9finis par un groupe de travail, \u00e0 partir des demandes exprim\u00e9es par les adh\u00e9rents. Elle accompagne \u00e9galement l\u2019\u00e9volution de l\u2019association, qui renforce son engagement sur les dimensions familiales, sociales et psychologiques de la maladie.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les questionnaires s\u2019adressent \u00e0 diff\u00e9rents publics. \u00ab Vivre avec la douleur \u00bb explore le quotidien des personnes confront\u00e9es aux douleurs et leurs besoins de prise en charge. \u00ab Grandir avec un Chiari ou une syringomy\u00e9lie \u00bb donne la parole aux enfants et aux adolescents, tandis qu\u2019\u00ab \u00catre parent ou proche d\u2019un enfant malade \u00bb recueille l\u2019exp\u00e9rience de leur entourage. Enfin, \u00ab La vie d\u2019apr\u00e8s \u00bb s\u2019int\u00e9resse aux r\u00e9percussions psychologiques du diagnostic et, pour les personnes op\u00e9r\u00e9es, au v\u00e9cu de la convalescence.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les r\u00e9ponses recueillies permettront de mieux identifier les besoins et d\u2019orienter les actions d\u2019information, d\u2019accompagnement et de plaidoyer d\u2019APAISER S&amp;C. L\u2019association invite chacun \u00e0 participer aux questionnaires correspondant \u00e0 sa situation et remercie par avance les r\u00e9pondants pour leur contribution \u00e0 cette d\u00e9marche collective.<br><\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\"><a href=\"https:\/\/apaiser.org\/newsite\/enquete-vivre-avec-le-chiari-ou-la-syringomyelie\/\">R\u00e9pondre aux questionnaires<\/a><\/h2>\n","protected":false},"excerpt":{"rendered":"<p>Cinq ans apr\u00e8s la premi\u00e8re \u00e9dition de l&#8217;enqu\u00eate \u00ab Vivre avec le Chiari ou la syringomy\u00e9lie \u00bb, APAISER S&#038;C lance quatre nouveaux questionnaires pour mieux comprendre l&#8217;impact de la maladie sur votre quotidien. Douleurs, enfance, accompagnement d\u2019un enfant malade et vie apr\u00e8s le diagnostic : la d\u00e9marche explore les exp\u00e9riences des personnes concern\u00e9es et de leurs proches.<\/p>\n","protected":false},"author":1,"featured_media":9157,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[35],"tags":[],"class_list":["post-9156","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actus"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u00ab Vivre avec \u00bb : lancement d&#039;une nouvelle consultation - Apaiser S&amp;C<\/title>\n<meta name=\"description\" content=\"Cinq ans apr\u00e8s la premi\u00e8re \u00e9dition de l&#039;enqu\u00eate \u00ab Vivre avec le Chiari ou la syringomy\u00e9lie \u00bb, APAISER S&amp;C lance quatre nouveaux questionnaires pour mieux comprendre l&#039;impact de la maladie sur votre quotidien. Douleurs, enfance, accompagnement d\u2019un enfant malade et vie apr\u00e8s le diagnostic : la d\u00e9marche explore les exp\u00e9riences des personnes concern\u00e9es et de leurs proches.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/apaiser.org\/newsite\/2026\/11\/05\/vivre-avec-lancement-dune-nouvelle-consultation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00ab Vivre avec \u00bb : lancement d&#039;une nouvelle consultation - Apaiser S&amp;C\" \/>\n<meta property=\"og:description\" content=\"Cinq ans apr\u00e8s la premi\u00e8re \u00e9dition de l&#039;enqu\u00eate \u00ab Vivre avec le Chiari ou la syringomy\u00e9lie \u00bb, APAISER S&amp;C lance quatre nouveaux questionnaires pour mieux comprendre l&#039;impact de la maladie sur votre quotidien. 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