{"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":"how-people-with-usher-syndrome-master-their-everyday-lives","status":"publish","type":"post","link":"https:\/\/www.eikholt.no\/en\/articles\/how-people-with-usher-syndrome-master-their-everyday-lives\/","title":{"rendered":"How do people with Usher syndrome manage their everyday lives?"},"content":{"rendered":"<p class=\"wp-block-paragraph\">In research, people with deafblindness are often described as vulnerable and in need of help. In a Swedish study, however, the authors highlight how deafblind people actively take action and use a variety of coping strategies in their daily lives.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Interview and results from the study<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The researchers interviewed 14 people with Usher syndrome type 2A, aged 20-64 years. The participants had moderate to severe hearing loss and varying degrees of progressive visual loss.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The results showed that the participants used a variety of coping strategies in everyday life:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Staying active<\/strong><br>Maintain activity, work, movement, social contact, and physical activity. When this became difficult or energy-consuming, they adjusted the pace, the surroundings, the work tasks, or the activity itself.<\/li>\n\n\n\n<li><strong>Using assistive devices<\/strong><br>The use of various assistive devices contributed to increased independence and participation. Some experienced stigma associated with visible assistive devices.<\/li>\n\n\n\n<li><strong>Accepting support<\/strong><br>Participants used both formal support from healthcare professionals, rehabilitation services, companions and interpreters, and informal support from family, friends and other people with Usher. The support could increase safety and independence, but could also be perceived as a reminder of lost function and dependence.<\/li>\n\n\n\n<li><strong>Valuing the present moment<\/strong><br>Many tried to concentrate on what they could do here and now, rather than letting the fear of future loss dominate. Meaningful activities, work, family, friends, music, reading, exercise, and small everyday pleasures were of great importance.<\/li>\n\n\n\n<li><strong>Maintaining a positive self-image<\/strong><br>The participants wanted to preserve their identity as whole people \u2013 not just be defined by Usher syndrome or deafblindness. They worked to maintain self-respect, claim their own rights, and find a balance between independence and the need for help.<\/li>\n\n\n\n<li><strong>Reducing emotional pain<\/strong><br>Humor, distance from difficult thoughts, disconnection, hope, and certain forms of avoidance were used to cope with grief, frustration, and uncertainty.<\/li>\n<\/ul>\n\n\n\n<h1 class=\"wp-block-heading\">People with deafblindness show resilience and creativity<\/h1>\n\n\n\n<p class=\"wp-block-paragraph\">The study challenges the image of people with deafblindness as solely vulnerable. Instead, the authors find that people with deafblindness can demonstrate significant resilience and creativity in the face of practical, social, and emotional challenges.<\/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>\u00abThe study demonstrates that people with USH2a manage in many ways, and metahporically, by `taking the helm`, they strive to actively navigate towards their own chosen values\u00bb (Ehn mfl. 2019)<\/sub><\/p>\n<\/blockquote>\n\n\n\n<h2 class=\"wp-block-heading\">What does this mean for rehabilitation?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">According to the authors, rehabilitation should include, among other things:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Conversations about how the participants\u2019 own resources and strategies can support rehabilitation<\/li>\n\n\n\n<li>Early and individually tailored follow-up.<\/li>\n\n\n\n<li>Psychological support<\/li>\n\n\n\n<li>Access to technical aids and training in their use<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">The study supports the course offerings at EIkholt<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The results of the study support Eikholt their services and course offerings. In line with the recommendations of the researchers, Eikholt they are committed to not only focusing on functional impairments and problems, but also on the person\u2019s resources, values, own coping strategies, and participation in society.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Want to read more?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The study can be read in its entirety here: <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/31470768\/\"><strong>Life strategies of people with deafblindness due to Usher syndrome type 2a \u2013 a qualitative study \u2013 PubMed<\/strong><\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Source: <\/strong>Mattias Ehn, Agneta Anderz\u00e9n-Carlsson, Claes M\u00f6ller and Moa Wahlqvist<br><strong>Published:<\/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\">To create a Norwegian summary of the research article, we have used artificial intelligence (AI) in the writing process. The original article (Ehn et al. 2019) has been checked for quality to ensure the content is correct.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Do you have any questions about the study?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Contact 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>People with deafblindness are often described as vulnerable and in need of help. In a Swedish study, however, the authors highlight how deafblind people take active steps and use a range of coping strategies in their everyday lives.<\/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? En svensk studie viser strategier for mestring, deltakelse, st\u00f8tte og selvstendighet.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.eikholt.no\/en\/articles\/how-people-with-usher-syndrome-master-their-everyday-lives\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Hvordan mestrer personer med Usher syndrom sin hverdag? - Eikholt\" \/>\n<meta property=\"og:description\" content=\"Hvordan mestrer personer med Usher syndrom hverdagen? 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