{"id":1350,"date":"2015-02-21T14:23:00","date_gmt":"2015-02-21T13:23:00","guid":{"rendered":"https:\/\/www.aica3.org\/cms\/?p=1350"},"modified":"2021-12-28T12:01:31","modified_gmt":"2021-12-28T11:01:31","slug":"young-adults-experiences-living-recessive-limb-girdle-muscular-dystrophy-salutogenic-orientation-interview-study","status":"publish","type":"post","link":"https:\/\/www.aica3.org\/cms\/en\/young-adults-experiences-living-recessive-limb-girdle-muscular-dystrophy-salutogenic-orientation-interview-study\/","title":{"rendered":"Young adults\u2019 experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study"},"content":{"rendered":"<p><em>Anna Carin Aho, Sally Hultsjo, and Katarina Hjelm<br \/>\nDepartment of Health and Caring Sciences, Linnaeus University, Va \u0308xjo \u0308, Sweden, Psychiatric Clinic, County Hospital, Ryhov, Jo \u0308nko \u0308ping, Sweden, and Department of Social and Welfare Studies, Campus Norrko \u0308ping, Linko \u0308ping University, Linko \u0308ping, Sweden<br \/>\n<\/em><\/p>\n<p>Young adults\u2019 experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study<br \/>\nPurpose: To describe young adults\u2019 experiences of living with recessive limb-girdle muscular dystrophy (LGMD2) from a salutogenic orientation. Methods: A qualitative explorative interview study, including 14 participants aged 20\u201330 years, was performed focusing on comprehen- sibility, manageability and meaningfulness in daily life. Content analysis was used for data analysis. Result: Living with LGMD2 not only implies learning to live with the disease and the variations between good and bad periods but also means trying to make sense of a progressive disease that brings uncertainty about future health, by striving to make the best of the situation. Disease progression involves practical and mental struggle, trying to maintain control over one\u2019s life despite vanished physical functions that require continual adjustments to the body. Restrictions in a double sense were described, not only due to the disease but also due to poor comprehension of the disease in society. Lack of knowledge about LGMD2 among professionals often results in having to fight for the support needed. Conclusion: In order to manage daily life, it is important to be seen and understood as an individual in contacts with professionals and in society in general, to have informal social support and meaningful activities as well as access to personal assistance if necessary.<\/p>\n<p>&nbsp;<\/p>\n<p>ENGLISH &#8211; <a href=\"https:\/\/www.aica3.org\/cms\/wp-content\/uploads\/2015\/02\/Hao2015.pdf\" target=\"_blank\" rel=\"noopener\">Click to download the full version of the article<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Anna Carin Aho, Sally Hultsjo, and Katarina Hjelm Department of Health and Caring Sciences, Linnaeus University, Va \u0308xjo \u0308, Sweden, Psychiatric Clinic, County Hospital, Ryhov, Jo \u0308nko \u0308ping, Sweden, and Department of Social and Welfare Studies, Campus Norrko \u0308ping, Linko \u0308ping University, Linko \u0308ping, Sweden Esperienze di giovani adulti che vivono con la distrofia muscolare [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[34,33],"tags":[],"class_list":["post-1350","post","type-post","status-publish","format-standard","hentry","category-articoli-scientifici","category-ricerca-e-pubblicazioni"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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