{"id":6395,"date":"2026-09-30T19:06:32","date_gmt":"2026-09-30T19:06:32","guid":{"rendered":"https:\/\/www.eikholt.no\/?p=6395"},"modified":"2026-09-30T19:06:33","modified_gmt":"2026-09-30T19:06:33","slug":"hur-lyckas-personer-med-usher-syndrom-med-att-hantera-sin-vardag","status":"publish","type":"post","link":"https:\/\/www.eikholt.no\/sv\/artiklar\/hur-lyckas-personer-med-usher-syndrom-med-att-hantera-sin-vardag\/","title":{"rendered":"Hur lyckas personer med Usher syndrom hantera sin vardag?"},"content":{"rendered":"<p class=\"wp-block-paragraph\">I forskning omn\u00e4mns personer med d\u00f6vblindhet ofta som s\u00e5rbara och beh\u00f6vande av hj\u00e4lp. I en svensk studie lyfter f\u00f6rfattarna d\u00e4remot fram hur d\u00f6vblinda aktivt agerar och anv\u00e4nder en rad bem\u00e4strande strategier i sin vardag.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Intervju och resultat fr\u00e5n studien<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Forskarna intervjuade 14 personer med Usher syndrom typ 2A, i \u00e5ldrarna 20-64 \u00e5r. Deltagarna hade m\u00e5ttlig till allvarlig h\u00f6rselneds\u00e4ttning och varierande grad av progressiv synneds\u00e4ttning.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Resultaten visade att deltagarna anv\u00e4nde en m\u00e4ngd olika bem\u00e4strande strategier i vardagen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Att f\u00f6rbli aktiv<\/strong><br>Uppr\u00e4tth\u00e5lla aktivitet, arbete, r\u00f6relse, social kontakt och fysisk aktivitet. N\u00e4r detta blev sv\u00e5rt eller energikr\u00e4vande anpassade de tempot, omgivningen, arbetsuppgifterna eller sj\u00e4lva aktiviteten.<\/li>\n\n\n\n<li><strong>Att anv\u00e4nda hj\u00e4lpmedel<\/strong><br>Anv\u00e4ndningen av olika hj\u00e4lpmedel bidrog till \u00f6kad sj\u00e4lvst\u00e4ndighet och delaktighet. Vissa upplevde stigma kopplat till synliga hj\u00e4lpmedel.<\/li>\n\n\n\n<li><strong>Att ta emot st\u00f6d<\/strong><br>De deltagande anv\u00e4nd b\u00e5de formell st\u00f6d fr\u00e5n h\u00e4lso- och sjukv\u00e5rden, rehabiliteringstj\u00e4nster, f\u00f6ljeslagare och tolkar, samt informell st\u00f6d fr\u00e5n familj, v\u00e4nner och andra personer med Usher. St\u00f6d kunde \u00f6ka tryggheten och sj\u00e4lvst\u00e4ndigheten, men kunde ocks\u00e5 upplevas som en p\u00e5minnelse om f\u00f6rlorad funktion och beroende.<\/li>\n\n\n\n<li><strong>Att v\u00e4rdera nuet<\/strong><br>M\u00e5nga f\u00f6rs\u00f6kte koncentrera sig p\u00e5 det de kunde g\u00f6ra h\u00e4r och nu, i st\u00e4llet f\u00f6r att l\u00e5ta r\u00e4dslan f\u00f6r framtida f\u00f6rlust dominera. Meningsfulla aktiviteter, arbete, familj, v\u00e4nner, musik, l\u00e4sning, tr\u00e4ning och sm\u00e5 vardagliga gl\u00e4dje\u00e4mnen hade stor betydelse.<\/li>\n\n\n\n<li><strong>Att uppr\u00e4tth\u00e5lla en positiv sj\u00e4lvk\u00e4nsla<\/strong><br>De deltagare som ville bevara sin identitet som m\u00e4nniskor i sin helhet \u2013 inte bara bli definierade av Usher syndrom eller d\u00f6vblindhet. De arbetade med att beh\u00e5lla sj\u00e4lvk\u00e4nsla, h\u00e4vda sina r\u00e4ttigheter och hitta en balans mellan sj\u00e4lvst\u00e4ndighet och behovet av hj\u00e4lp.<\/li>\n\n\n\n<li><strong>Att minska k\u00e4nslom\u00e4ssig sm\u00e4rta<\/strong><br>Humor, avst\u00e5nd fr\u00e5n sv\u00e5ra tankar, avkoppling, hopp och vissa former av undvikande anv\u00e4ndes f\u00f6r att hantera sorg, frustration och os\u00e4kerhet.<\/li>\n<\/ul>\n\n\n\n<h1 class=\"wp-block-heading\">Personer med d\u00f6vblindhet visar motst\u00e5ndskraft och kreativitet<\/h1>\n\n\n\n<p class=\"wp-block-paragraph\">Studien ifr\u00e5gas\u00e4tter bilden av personer med d\u00f6vblindhet som enbart utsatta. I st\u00e4llet menar f\u00f6rfattarna att personer med d\u00f6vblindhet kan visa betydande motst\u00e5ndskraft och kreativitet n\u00e4r de st\u00e5r inf\u00f6r praktiska, sociala och k\u00e4nslom\u00e4ssiga utmaningar.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><sub>Studien visar att personer med USH2a p\u00e5 m\u00e5nga s\u00e4tt och p\u00e5 ett metahistoriskt s\u00e4tt lyckas genom att \u201dta vid\u201d, och str\u00e4var efter att aktivt navigera mot sina egna valda v\u00e4rderingar (Ehn mfl. 2019).<\/sub><\/p>\n<\/blockquote>\n\n\n\n<h2 class=\"wp-block-heading\">Vad betyder detta f\u00f6r rehabilitering?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Enligt f\u00f6rfattarna b\u00f6r rehabilitering bland annat omfatta:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Samtal om hur deltagarnas egna resurser och strategier kan st\u00f6dja rehabiliteringen<\/li>\n\n\n\n<li>Fr\u00e5n tidig \u00e5lder och individuellt anpassad uppf\u00f6ljning.<\/li>\n\n\n\n<li>Psykologisk st\u00f6d<\/li>\n\n\n\n<li>Tillg\u00e5ng till tekniska hj\u00e4lpmedel och utbildning i hur man anv\u00e4nder dem<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Studien st\u00f6der kurstillbudet vid EIkholt<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Studieresultat st\u00f6der Eikholt dess tj\u00e4nster och kursprogram. I linje med forskarnas rekommendationer \u00e4r man engagerad i att inte bara Eikholt lyfta fram funktionsneds\u00e4ttningar och problem utan \u00e4ven individens resurser, v\u00e4rderingar, egna bem\u00e4stringsstrategier och samh\u00e4llsengagemang.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Vill du l\u00e4sa mer?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Studien kan l\u00e4sas i sin helhet h\u00e4r: <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/31470768\/\"><strong>Livsstrategier hos personer med d\u00f6vblindhet p\u00e5 grund av Usher syndrom typ 2a \u2013 en kvalitativ studie \u2013 PubMed<\/strong><\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>K\u00e4lla: <\/strong>Mattias Ehn, Agneta Anderz\u00e9n-Carlsson, Claes M\u00f6ller och Moa Wahlqvist<br><strong>Publicerad:<\/strong> <em>Internationell tidskrift f\u00f6r kvalitativ forskning om h\u00e4lsa och v\u00e4lbefinnande<\/em>, 2019<br><strong>DOI:<\/strong> 10.1080\/17482631.2019.1656790<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">F\u00f6r att skapa en norsk sammanfattning av forskningsartikeln har vi anv\u00e4nt artificiell intelligens (KI) under skrivprocessen. Den ursprungliga artikeln (Ehn mfl. 2019) har granskats f\u00f6r att kvalitetss\u00e4kra inneh\u00e5llet.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Har du fr\u00e5gor om studien?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Kontakta Andr\u00e8 V\u00e5gan: <a href=\"mailto:andre.vaagan@eikholt.no\">andre.vaagan@eikholt.no<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Personer med d\u00f6vblindhet omtalas ofta som s\u00e5rbara och beh\u00f6vande av hj\u00e4lp. I en svensk studie lyfter f\u00f6rfattarna d\u00e4remot fram hur d\u00f6vblinda aktivt agerar och anv\u00e4nder en rad bem\u00e4strande strategier i sin vardag.<\/p>","protected":false},"author":13,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"ep_exclude_from_search":false,"footnotes":""},"categories":[12,11],"tags":[101,102],"class_list":["post-6395","post","type-post","status-publish","format-standard","hentry","category-nyheter","category-fagstoff","tag-studie","tag-usher-syndrom"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Hvordan mestrer personer med Usher syndrom sin hverdag? - Eikholt<\/title>\n<meta name=\"description\" content=\"Hvordan mestrer personer med Usher syndrom hverdagen? 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