{"id":140854,"date":"2022-05-01T01:08:25","date_gmt":"2022-05-01T05:08:25","guid":{"rendered":"https:\/\/ifamnews.com\/?p=140854"},"modified":"2022-05-01T01:08:25","modified_gmt":"2022-05-01T05:08:25","slug":"les-enfants-atteints-du-syndrome-de-down-vont-tre-mieux-prot-g-aux-tats-unis","status":"publish","type":"post","link":"https:\/\/ifamnews.com\/fr\/les-enfants-atteints-du-syndrome-de-down-vont-tre-mieux-prot-g-aux-tats-unis","title":{"rendered":"Les enfants atteints du syndrome de Down, vont \u00eatre mieux prot\u00e9g\u00e9 aux \u00c9tats-Unis."},"content":{"rendered":"\n

L’ Acad\u00e9mie<\/a> Am\u00e9ricaine de P\u00e9diatrie<\/a> (AAP) met \u00e0 jour ses directives sur la mani\u00e8re de poser le diagnostic du syndrome de Down, et c’est un changement positif.<\/p>\n\n\n\n

Le R\u00e9seau de diagnostic du syndrome de Down<\/a> (DSDN) a \u00e9t\u00e9 <\/wpml_curved>\u00a0\u00bb rel=\u00a0\u00bb<\/wpml_curved> noopener\u00a0\u00bb>lanc\u00e9 aux \u00c9tats-Unis d’Am\u00e9rique lors de la Journ\u00e9e mondiale de la trisomie 21 en 2014<\/a> pour contibuer \u00e0 soutenir les familles d’enfants atteints de cette maladie face aux diagnostics pr\u00e9 et post-natals.<\/p>\n\n\n\n

L’autre aspect de la mission du DSDN est d’essayer d’am\u00e9liorer la fa\u00e7on dont la communaut\u00e9 m\u00e9dicale \u00e9tablit des diagnostics, c’est-\u00e0-dire en mettant l’accent sur la n\u00e9cessit\u00e9 de transmettre des informations pr\u00e9cises et actualis\u00e9es. \u00c0 cette fin, le r\u00e9seau a \u00e9galement fait la promotion de directives am\u00e9ricaines reconnues au niveau national, d’un<\/a> programme de r\u00e9troaction<\/em><\/a> m\u00e9dicale et de ressources destin\u00e9es sp\u00e9cifiquement aux professionnels de la sant\u00e9<\/a>.<\/p>\n\n\n\n

Une autre campagne du<\/a> DSDN met en lumi\u00e8re les lettres adress\u00e9es par les parents aux m\u00e9decins qui ont pos\u00e9 les diagnostics, dont seule une petite partie s’est av\u00e9r\u00e9e exacte. Par exemple, une m\u00e8re d\u00e9clare que les m\u00e9decins ont d\u00e9sign\u00e9 son enfant par le pronom neutre \u00ab\u00a0il\u00a0\u00bb, tandis qu’une autre s’est entendu dire que sa fille serait un \u00ab\u00a0l\u00e9gume\u00a0\u00bb.<\/p>\n\n\n\n

Des m\u00e9decins inappropri\u00e9s<\/strong><\/h3>\n\n\n\n

Parce que les exp\u00e9riences n\u00e9gatives ne manquent pas. Heather Bradley, membre du conseil d’administration et ancienne pr\u00e9sidente du r\u00e9seau, rapporte ce qu’elle a dit lors d’une r\u00e9union de district de l’American College of Obstetricians and Gynecologists dans le Wisconsin.<\/p>\n\n\n\n

\u00ab\u00a0Un sp\u00e9cialiste de la m\u00e9decine materno-f\u0153tale du Minnesota a d\u00e9clar\u00e9 que poser un diagnostic de trisomie 21 revenait \u00e0 donner \u00e0 quelqu’un un ‘sandwich de merde'\u00a0\u00bb, \u00e9crit Bradley sur Facebook<\/a>. \u00ab\u00a0Lorsque des parents apprennent la nouvelle que leur enfant est trisomique et que les premiers mots de r\u00e9ponse qu’ils re\u00e7oivent sont \u00ab\u00a0je suis tellement d\u00e9sol\u00e9\u00a0\u00bb ou \u00ab\u00a0quand dois-je programmer l’interruption de grossesse ?\u00a0\u00bb, que dit le m\u00e9decin de cet ENFANT ? Il dit d\u00e9finitivement \u00e0 ces parents que leur enfant est un \u00ab\u00a0sandwich de merde\u00a0\u00bb.\u00a0\u00bb<\/p>\n\n\n\n

Une enqu\u00eate r\u00e9v\u00e8le que seulement 11 % des femmes font \u00e9tat d’une exp\u00e9rience positive avec leur m\u00e9decin lorsqu’elles sont confront\u00e9es \u00e0 un diagnostic de la maladie<\/a>, tandis qu’une autre enqu\u00eate r\u00e9v\u00e8le que 13 % des m\u00e9decins admettent mettre d\u00e9lib\u00e9r\u00e9ment l’accent sur les aspects n\u00e9gatifs du syndrome de Down<\/a> dans le but de pousser les parents \u00e0 avorter.<\/p>\n\n\n\n

Pas un malheur, mais une condition qui n’exclut pas le bonheur<\/strong><\/h3>\n\n\n\n

Des ann\u00e9es de travail acharn\u00e9 et de plaidoyer <\/em>changent cependant les choses. Le nouveau <\/wpml_curved>\u00a0\u00bb rel=\u00a0\u00bb<\/wpml_curved> noopener\u00a0\u00bb>rapport clinique<\/a> de l’AAP<\/a> met \u00e0 jour les directives destin\u00e9es aux m\u00e9decins sur la mani\u00e8re de communiquer les diagnostics. Les familles doivent recevoir des compliments (et ne pas se sentir oblig\u00e9es de s’excuser pour cet enfant), appeler l’enfant par son nom et avoir quelqu’un pour les soutenir pendant l’entretien.<\/p>\n\n\n\n

Il est \u00e9galement demand\u00e9 aux cliniciens de mettre de c\u00f4t\u00e9 leurs pr\u00e9jug\u00e9s personnels, d’utiliser des informations actualis\u00e9es et exactes, d’employer un langage centr\u00e9 sur la personne et de mettre les parents en contact avec des groupes de soutien et des ressources disponibles localement. Et aussi de mettre l’accent sur les aspects positifs du syndrome de Down, notamment le bonheur que communiquent de nombreuses familles \u00e0 propos de leur identit\u00e9 et de la vie qu’elles m\u00e8nent.<\/p>\n\n\n\n

Dans le cas des diagnostics pr\u00e9nataux, les m\u00e9decins n’ont plus \u00e0 supposer que les parents veulent avorter, ils n’ont plus \u00e0 prendre rendez-vous pour des interruptions de grossesse sans leur autorisation, ni m\u00eame \u00e0 forcer les m\u00e8res \u00e0 avorter.<\/p>\n\n\n\n

Les m\u00e8res n’ont jamais abandonn\u00e9<\/strong><\/h3>\n\n\n\n

\u00ab\u00a0Pendant des ann\u00e9es, nous avons travaill\u00e9 avec les professionnels de la sant\u00e9 pour am\u00e9liorer l’exp\u00e9rience des familles lorsqu’elles sont confront\u00e9es \u00e0 des diagnostics\u00a0\u00bb et \u00ab\u00a0nous avons partag\u00e9 les histoires des familles pr\u00e9sentes dans le r\u00e9seau avec les professionnels de la sant\u00e9\u00a0\u00bb, \u00e0 qui nous avons demand\u00e9 d’adopter une \u00ab\u00a0approche pr\u00e9cise, actualis\u00e9e et impartiale.\u00a0\u00bb d\u00e9clare Jenny Di Benedetto, fondatrice et directrice du DSDN de Medical Outreach<\/a>. C’est-\u00e0-dire que \u00ab\u00a0nous avons apport\u00e9 un changement r\u00e9el et tangible dans la fa\u00e7on dont les diagnostics sont d\u00e9livr\u00e9s\u00a0\u00bb. Un succ\u00e8s tr\u00e8s important.<\/p>\n","protected":false},"excerpt":{"rendered":"

Nouvelles directives de l’Acad\u00e9mie am\u00e9ricaine de p\u00e9diatrie : enfin, proposer l’avortement aux parents de b\u00e9b\u00e9s atteints de DS ne sera plus quelque chose qui va de soi.<\/p>\n","protected":false},"author":545,"featured_media":140634,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"mc4wp_mailchimp_campaign":[],"jnews-multi-image_gallery":[],"jnews_single_post":{"subtitle":"Nouvelles directives de l'Acad\u00e9mie am\u00e9ricaine de p\u00e9diatrie : enfin, proposer l'avortement aux parents de b\u00e9b\u00e9s atteints de DS ne sera plus quelque chose qui va de soi.","format":"standard"},"jnews_primary_category":[],"jnews_social_meta":[],"jnews_override_counter":[],"footnotes":""},"categories":[809,813,819],"tags":[10014,18542,8544],"class_list":["post-140854","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-foreground-fr","category-breaking-news-fr","category-vie","tag-enfant","tag-protection","tag-trisomie"],"yoast_head":"\nLes enfants atteints du syndrome de Down, vont \u00eatre mieux prot\u00e9g\u00e9 aux \u00c9tats-Unis. - 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Don Bosco raccontato dai salesiani del XXI Secolo","sameAs":["https:\/\/x.com\/https:\/\/twitter.com\/luketto2"],"url":"https:\/\/ifamnews.com\/fr\/author\/luca-marcolivio"}]}},"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/posts\/140854","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/users\/545"}],"replies":[{"embeddable":true,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/comments?post=140854"}],"version-history":[{"count":5,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/posts\/140854\/revisions"}],"predecessor-version":[{"id":140859,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/posts\/140854\/revisions\/140859"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/media\/140634"}],"wp:attachment":[{"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/media?parent=140854"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/categories?post=140854"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ifamnews.com\/fr\/wp-json\/wp\/v2\/tags?post=140854"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}