{"id":6395,"date":"2026-09-30T19:06:32","date_gmt":"2026-09-30T19:06:32","guid":{"rendered":"https:\/\/www.eikholt.no\/?p=6395"},"modified":"2026-10-06T11:31:55","modified_gmt":"2026-10-06T11:31:55","slug":"hvordan-personer-med-usher-syndrom-mestre-deres-hverdag","status":"publish","type":"post","link":"https:\/\/www.eikholt.no\/da\/artikler\/hvordan-personer-med-usher-syndrom-mestre-deres-hverdag\/","title":{"rendered":"Hvordan h\u00e5ndterer personer med Usher syndrom deres hverdag?"},"content":{"rendered":"<p class=\"wp-block-paragraph\">I forskning omtales personer med d\u00f8vblindhed ofte som s\u00e5rbare og hj\u00e6lpetrengende. I en svensk unders\u00f8gelse fremh\u00e6ver forfatterne derimod, hvordan d\u00f8vblinde aktivt griber ind og bruger en r\u00e6kke successtrategier i deres hverdag.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Interview og resultater fra studiet<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Forskere interviewede 14 personer med Usher syndrom type 2A, i alderen 20-64 \u00e5r. Deltagerne havde moderat til alvorligt h\u00f8retab og varierende grad af progressiv synstab.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Resultaterne viste, at deltagerne brugte en r\u00e6kke successtrategier i hverdagen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>At forblive aktive<\/strong><br>Opretholde aktivitet, arbejde, bev\u00e6gelse, social kontakt og fysisk aktivitet. N\u00e5r dette blev sv\u00e6rt eller kr\u00e6vende i energi, tilpassede de tempoet, omgivelserne, arbejdsopgaverne eller selve aktiviteten.<\/li>\n\n\n\n<li><strong>At bruge hj\u00e6lpemidler<\/strong><br>Brugen af forskellige hj\u00e6lpemidler bidrog til \u00f8get selvst\u00e6ndighed og deltagelse. Nogle oplevede stigma forbundet med synlige hj\u00e6lpemidler.<\/li>\n\n\n\n<li><strong>At modtage st\u00f8tte<\/strong><br>De deltagende brugte b\u00e5de formel st\u00f8tte fra sundhedsv\u00e6senet, rehabiliteringsydelser, ledsagere og tolke samt uformel st\u00f8tte fra familie, venner og andre personer med Usher. St\u00f8tten kunne \u00f8ge sikkerheden og selvhj\u00e6lpsniveauet, men kunne ogs\u00e5 opleves som en p\u00e5mindelse om tabt funktion og afh\u00e6ngighed.<\/li>\n\n\n\n<li><strong>At v\u00e6rds\u00e6tte nutiden<\/strong><br>Mange fors\u00f8gte at koncentrere sig om det, de kunne g\u00f8re her og nu, i stedet for at lade frygten for fremtidig tab dominere. Meningsfulde aktiviteter, arbejde, familie, venner, musik, l\u00e6sning, motion og sm\u00e5 hverdagsgl\u00e6der havde stor betydning.<\/li>\n\n\n\n<li><strong>At opretholde et positivt selvbillede<\/strong><br>Deltagerne \u00f8nskede at bevare deres identitet som mennesker \u2013 ikke blot blive defineret af Usher syndrom eller d\u00f8vblindhed. De arbejdede for at bevare deres selvtillid, h\u00e6vde deres rettigheder og finde en balance mellem selvst\u00e6ndighed og behovet for hj\u00e6lp.<\/li>\n\n\n\n<li><strong>At reducere f\u00f8lelsesm\u00e6ssig smerte<\/strong><br>Humor, afstand til sv\u00e6re tanker, afkobling, h\u00e5b og enkelte former for undg\u00e5else blev brugt til at h\u00e5ndtere sorg, frustration og usikkerhed.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Personer med d\u00f8vblindhed viser modstandskraft og kreativitet<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Studiet udfordrer forestillingen om personer med d\u00f8vblindhed som udelukkende s\u00e5rbare. I stedet mener forfatterne, at personer med d\u00f8vblindhed kan vise betydelig modstandskraft og kreativitet i m\u00f8det med praktiske, sociale og f\u00f8lelsesm\u00e6ssige udfordringer.<\/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>Studiet viser, at personer med USH2a p\u00e5 mange m\u00e5der og p\u00e5 en metahistorisk m\u00e5de form\u00e5r at \"tage roret\": De str\u00e6ber efter at aktivt navigere mod deres egne valgte v\u00e6rdier. <\/sub><\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\"><sub><strong>(Ehn mfl. 2019)<\/strong><\/sub><\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Hvad betyder dette for rehabilitering?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">If\u00f8lge forfatterne b\u00f8r rehabilitering blandt andet omfatte:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Dr\u00f8ftelser om, hvordan deltagernes egne ressourcer og strategier kan underst\u00f8tte rehabilitering<\/li>\n\n\n\n<li>Tidlig og individuelt tilpasset opf\u00f8lgning.<\/li>\n\n\n\n<li>Psykologisk st\u00f8tte<\/li>\n\n\n\n<li>Adgang til tekniske hj\u00e6lpemidler og undervisning i brugen af dem<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Studiet underst\u00f8tter l\u00e6ringsindsatsen ved EIkholt<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Resultaterne fra studiet underst\u00f8tter Eikholt deres tjenester og kurstilbud. I Eikholt overensstemmelse med forskernes anbefalinger er de optagede af ikke kun at fokusere p\u00e5 funktionsneds\u00e6ttelser og problemer, men ogs\u00e5 p\u00e5 den persons ressourcer, v\u00e6rdier, egne strategier for succes og deltagelse i samfundet.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Vil du l\u00e6se mere?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Studien kan l\u00e6ses i sin helhed her: <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/31470768\/\"><strong>Livestrategier hos mennesker med d\u00f8vblindhed p\u00e5 grund af Usher syndrom type 2a \u2013 en kvalitativ unders\u00f8gelse \u2013 PubMed<\/strong><\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Kilde: <\/strong>Mattias Ehn, Agneta Anderz\u00e9n-Carlsson, Claes M\u00f6ller og Moa Wahlqvist<br><strong>Publisert:<\/strong> <em>International Journal of Qualitative Studies on Health and Well-being<\/em>, 2019<br><strong>DOI:<\/strong> 10.1080\/17482631.2019.1656790<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For at skabe en norsk sammenfatning af forskningsartiklen har vi brugt kunstig intelligens (KI) i skriveprocessen. Den oprindelige artikel (Ehn mfl. 2019) er blevet gennemg\u00e5et for at sikre kvaliteten af indholdet.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Har du sp\u00f8rgsm\u00e5l til studiet?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Kontakt 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\u00f8vblindhed omtales ofte som s\u00e5rbare og hj\u00e6lpetrengende. I en svensk unders\u00f8gelse fremh\u00e6ver forfatterne derimod, hvordan d\u00f8vblinde aktivt griber ind og bruger en r\u00e6kke successtrategier i deres hverdag.<\/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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