{"id":2137,"date":"2022-06-23T10:26:07","date_gmt":"2022-06-23T09:26:07","guid":{"rendered":"https:\/\/blog.u-bourgogne.fr\/recherches-shs-proches-aidants-handicaps\/?p=2137"},"modified":"2024-05-25T10:39:22","modified_gmt":"2024-05-25T09:39:22","slug":"le-projet-casepra","status":"publish","type":"post","link":"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/2022\/06\/23\/le-projet-casepra\/","title":{"rendered":"Le projet CASEPRA"},"content":{"rendered":"<p><strong>Une recherche pluridisciplinaire et participative d\u00e9di\u00e9e aux parents-aidants d&#8217;un enfant atteint ou suspect\u00e9 d&#8217;une maladie rare et\/ou d&#8217;un handicap rare.<br \/>\n<\/strong><\/p>\n<p>&nbsp;<\/p>\n<h4><strong>Contexte<br \/>\n<\/strong><\/h4>\n<p>Le 1<sup>er<\/sup> plan national d\u2019aide aux aidants en France, dont l\u2019une des priorit\u00e9s est la conciliation entre la vie personnelle et la vie professionnelle, est une reconnaissance institutionnelle du r\u00f4le des aidants. N\u00e9anmoins parmi les aidants, les situations sont h\u00e9t\u00e9rog\u00e8nes et celle des parents-aidants est peu document\u00e9e dans la litt\u00e9rature.<\/p>\n<p>&nbsp;<\/p>\n<h4><strong>Objectifs<br \/>\n<\/strong><\/h4>\n<p>Cette recherche vise \u00e0 i<strong>dentifier, d\u00e9crire et analyser<\/strong> :<\/p>\n<ul>\n<li>les <strong>situations d\u2019aide<\/strong> apport\u00e9e par les parents-aidants aux enfants atteints de Maladies Rares (MR) et\/ou de Handicap Rare (HR),<\/li>\n<li>les <strong>r\u00e9percussions de cette aide<\/strong> sur la situation d\u2019emploi et la vie professionnelle des aidants.<\/li>\n<\/ul>\n<p><strong>Le ph\u00e9nom\u00e8ne de \u00ab raret\u00e9 \u00bb<\/strong> et\/ou ses impacts sera particuli\u00e8rement investigu\u00e9 puisque les MR et les HR sont souvent associ\u00e9s \u00e0 la raret\u00e9 des expertises et des r\u00e9ponses (notamment m\u00e9dicales et m\u00e9dico-sociales), \u00e0 la raret\u00e9 de l\u2019aide mobilisable (notamment due \u00e0 la complexit\u00e9 du handicap), \u00e0 l\u2019incertitude et au d\u00e9lai du diagnostic &#8211; autant de situations de nature \u00e0 influencer les configurations d\u2019aides dites informelles et la situation d\u2019emploi du parent-aidant.<\/p>\n<p>Les r\u00e9sultats permettront notamment de mettre en \u00e9vidence les leviers et les obstacles \u00e0 la reconnaissance du r\u00f4le des parents-aidants et \u00e0 la conciliation aide-vie professionnelle. Par extension \u00e0 d\u2019autres populations fragiles, ils permettront \u00e9galement d\u2019\u00e9clairer leurs situations d\u2019aides et nourrir des questionnements communs.<\/p>\n<p>&nbsp;<\/p>\n<h4><strong>\u00c9quipe pluridisciplinaire<br \/>\n<\/strong><\/h4>\n<ul>\n<li>des \u00e9quipes de recherche acad\u00e9miques en \u00e9conomie : LEDi (Universit\u00e9 de Bourgogne Franche-Comt\u00e9), Erudite (Universit\u00e9 Paris-Est Cr\u00e9teil Val de Marne) et CREG (Universit\u00e9 Grenoble Alpes) ;<\/li>\n<li>une \u00e9quipe de recherche en sociologie : C\u00e9rep (Universit\u00e9 Reims Champagne-Ardenne) ;<\/li>\n<li>deux fili\u00e8res de sant\u00e9 maladies rares : Fili\u00e8re AnDDI-Rares et Fili\u00e8re D\u00e9fiScience ;<\/li>\n<li>une \u00e9quipe relais handicaps rares : ERHR Nord-Est antenne Bourgogne Franche-Comt\u00e9 ;<\/li>\n<li>deux associations : UNAPEI et E-Norme.<\/li>\n<\/ul>\n<p>Responsable scientifique\u00a0: Aurore P\u00e9lissier (<span id=\"cloakda05b8897607c571e141ef1993b23cba\"><a href=\"mailto:aurore.pelissier@u-bourgogne.fr\">aurore.pelissier[at]u-bourgogne.fr<\/a><\/span>). Le projet CASEPRA est port\u00e9 au sein du Laboratoire d\u2019\u00c9conomie de Dijon \u00e0 l&#8217;universit\u00e9 de Bourgogne Franche-Comt\u00e9.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2361\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-Ledi-1.jpg\" alt=\"\" width=\"158\" height=\"79\" srcset=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-Ledi-1.jpg 630w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-Ledi-1-300x150.jpg 300w\" sizes=\"auto, (max-width: 158px) 100vw, 158px\" \/> \u00a0\u00a0 <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2360\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-uB-orange-transparent.png\" alt=\"\" width=\"107\" height=\"67\" srcset=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-uB-orange-transparent.png 450w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-uB-orange-transparent-300x187.png 300w\" sizes=\"auto, (max-width: 107px) 100vw, 107px\" \/> \u00a0\u00a0\u00a0 <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2362\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-UBFC_couleurs-WEB-450x200-1.jpg\" alt=\"\" width=\"187\" height=\"83\" srcset=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-UBFC_couleurs-WEB-450x200-1.jpg 450w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/logo-UBFC_couleurs-WEB-450x200-1-300x133.jpg 300w\" sizes=\"auto, (max-width: 187px) 100vw, 187px\" \/><\/p>\n<h4><strong>Financements<br \/>\n<\/strong><\/h4>\n<p>Cette recherche se d\u00e9cline en deux projets.<\/p>\n<ul>\n<li>La phase pilote CASEPRA-<em>Pil<\/em> (avril-d\u00e9cembre 2021). Il est laur\u00e9at de l\u2019appel \u00e0 projet \u00ab Sciences Humaines et sociales et maladies rares \u00bb 2020 de la Fondation Maladies Rares.\u00a0<a href=\"https:\/\/fondation-maladiesrares.org\/wp-content\/uploads\/2021\/10\/Projets_FMR_2020.pdffondation-maladiesrares.org\/wp-content\/uploads\/2021\/10\/Projets_FMR_2020.pdf*\" target=\"_blank\" rel=\"noopener\">Cliquez ici pour la liste des laur\u00e9ats.<\/a><\/li>\n<li>Le projet CASEPRA (avril 2021-mars 2024). Il est financ\u00e9 par la Caisse Nationale de Solidarit\u00e9 pour l&#8217;Autonomie (CNSA) dans le cadre du programme de recherche &#8220;Autonomie personnes \u00e2g\u00e9es et personne en situation de handicap&#8221; conduit par l&#8217;Institut pour la Recherche en Sant\u00e9 publique (IReSP) (AAP \u00ab Blanc (session 11) \u00bb 2020). Projet : BLC20_218793. <a href=\"https:\/\/www.iresp.net\/wp-content\/uploads\/2020\/12\/11.12.2020-Laureats-tous-AAP.pdf\" target=\"_blank\" rel=\"noopener\">Cliquez ici pour la liste des laur\u00e9ats.<\/a><\/li>\n<\/ul>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2222\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/F_Logo_Fon_Base.png\" alt=\"\" width=\"154\" height=\"63\" srcset=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/F_Logo_Fon_Base.png 2307w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/F_Logo_Fon_Base-768x314.png 768w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/F_Logo_Fon_Base-1536x627.png 1536w, https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/F_Logo_Fon_Base-2048x836.png 2048w\" sizes=\"auto, (max-width: 154px) 100vw, 154px\" \/> \u00a0 <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2221\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/cnsa.png\" alt=\"\" width=\"105\" height=\"73\" \/>\u00a0 \u00a0\u00a0 <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-2223\" src=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/wp-content\/uploads\/sites\/175\/2022\/06\/iresp.jpg\" alt=\"\" width=\"152\" height=\"60\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Une recherche pluridisciplinaire et participative d\u00e9di\u00e9e aux parents-aidants d&#8217;un enfant atteint ou suspect\u00e9 d&#8217;une maladie rare et\/ou d&#8217;un handicap rare. &nbsp; Contexte Le 1er plan national d\u2019aide aux aidants en France, dont l\u2019une des priorit\u00e9s est la conciliation entre la vie personnelle et la vie professionnelle, est une reconnaissance institutionnelle du r\u00f4le des aidants. N\u00e9anmoins&hellip;<\/p>\n<p class=\"more-link-p\"><a class=\"btn btn-primary\" href=\"https:\/\/blog.ube.fr\/recherches-shs-proches-aidants-handicaps\/2022\/06\/23\/le-projet-casepra\/\">Voir plus &rarr;<\/a><\/p>\n","protected":false},"author":4332,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[31],"tags":[38,39,41,40,35],"class_list":["post-2137","post","type-post","status-publish","format-standard","hentry","category-programme-de-recherche","tag-aidants","tag-casepra","tag-handicap-rare","tag-maladie-rare","tag-parents"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v21.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Le projet CASEPRA - Programme de recherche proches aidants handicaps<\/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:\/\/blog.u-bourgogne.fr\/recherches-shs-proches-aidants-handicaps\/2022\/06\/23\/le-projet-casepra\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Le projet CASEPRA - Programme de recherche proches aidants handicaps\" \/>\n<meta property=\"og:description\" content=\"Une recherche pluridisciplinaire et participative d\u00e9di\u00e9e aux parents-aidants d&#8217;un enfant atteint ou suspect\u00e9 d&#8217;une maladie rare et\/ou d&#8217;un handicap rare. &nbsp; Contexte Le 1er plan national d\u2019aide aux aidants en France, dont l\u2019une des priorit\u00e9s est la conciliation entre la vie personnelle et la vie professionnelle, est une reconnaissance institutionnelle du r\u00f4le des aidants. 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