{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,11,6]],"date-time":"2024-11-06T05:30:43Z","timestamp":1730871043909,"version":"3.28.0"},"reference-count":20,"publisher":"Georg Thieme Verlag KG","issue":"05","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Rehabilitation (Stuttg)"],"published-print":{"date-parts":[[2024,10]]},"abstract":"<jats:title>Zusammenfassung<\/jats:title><jats:p>\n          Ziel Hilfsmittel haben eine gro\u00dfe Bedeutung in der Neurop\u00e4diatrie, jedoch\n                    ist die Datenbasis zur selbsteingesch\u00e4tzten Hilfsmittelnutzung und -versorgung\n                    bei Betroffenen mit heredit\u00e4rer Ataxie gering. Ziel der vorliegenden Arbeit ist\n                    es daher, die individuelle Perspektive von Betroffenen auf die\n                    Hilfsmittelnutzung und -versorgung zu untersuchen und diese im Spannungsfeld der\n                    physiologischen und psychosozialen Entwicklung sowie der Symptomprogredienz zu\n                    diskutieren.<\/jats:p><jats:p>\n          Methodik Das Forschungsprojekt fand in Kooperation mit der Deutschen\n                    Heredo-Ataxie-Gesellschaft e.V. im Sinne des Ansatzes \u201ePatienten als Partner in\n                    der Wissenschaft\u201c statt. Die Daten wurden per Online-Fragebogen und\n                    Fokusgruppenbefragungen erhoben und mittels gemischt methodischen Vorgehens\n                    sowohl quantitativ als auch qualitativ analysiert.<\/jats:p><jats:p>\n          Ergebnisse Auf der Basis der vorliegenden Stichprobe mit Betroffenen aus\n                    dem Jugend- und Erwachsenenbereich (n=47 Online-Fragebogen, n=6\n                    Fokusgruppenbefragung) zeigt sich eine grunds\u00e4tzlich positive Einsch\u00e4tzung der\n                    Hilfsmittelnutzung. Im Kontrast dazu steht die individuelle Wahrnehmung des\n                    Hilfsmittelversorgungsprozesses, bei dem vier wesentliche Problemfelder\n                    identifiziert werden, die teilweise auf andere Krankheitsbilder \u00fcbertragbar\n                    sind, sich aber im Kinder- und Jugendbereich und durch die Seltenheit der\n                    heredit\u00e4ren Ataxie verst\u00e4rken. Zum einen besteht ein Spannungsfeld, dass sich\n                    gerade in der P\u00e4diatrie aus dem langwierigen Prozess bis der Diagnosestellung\n                    und der damit verbundenen L\u00fccke in der Indikation f\u00fcr ein Hilfsmittel w\u00e4hrend\n                    der Erstversorgung ergibt. Zum anderen unterscheidet sich der Hilfsmittelbedarf\n                    in der P\u00e4diatrie vom Erwachsenenbereich und gerade bei den Hilfsmitteln, die\n                    altersspezifisch zum Einsatz kommen fehlt h\u00e4ufig die Evidenz, die eine\n                    Verordnung rechtfertigen w\u00fcrde.<\/jats:p><jats:p>\n          Schlussfolgerung Neben der Notwendigkeit der Verbesserung des\n                    Versorgungsprozesses, besteht bei Kindern und Jugendlichen mit seltenen\n                    Erkrankungen, die von einer Symptomprogredienz gekennzeichnet sind, wesentliche\n                    L\u00fccken im Kenntnisstand bez\u00fcglich des Zusammenhangs zwischen Selbstbewusstsein\n                    und Krankheitsverarbeitung einerseits und der Akzeptanz von Hilfsmitteln\n                    andererseits. Dar\u00fcber hinaus zeigt sich eine dringende Notwendigkeit zur\n                    Verbesserung der Evidenzbasis f\u00fcr spezifische Hilfsmitteln insbesondere in ihrer\n                    Bedeutung f\u00fcr die Selbstst\u00e4ndigkeitsf\u00f6rderung entsprechend des jeweiligen Alters\n                    und der jeweiligen Entwicklungsphase.<\/jats:p>","DOI":"10.1055\/a-2408-3236","type":"journal-article","created":{"date-parts":[[2024,10,22]],"date-time":"2024-10-22T22:50:31Z","timestamp":1729637431000},"page":"307-315","source":"Crossref","is-referenced-by-count":0,"title":["Betrachtung der Wahrnehmung der Hilfsmittelnutzung und -versorgung im\n                    Spannungsfeld der Entwicklung im Kindes- und Jugendalter und Symptomprogredienz\n                    bei Betroffenen mit heredit\u00e4rer Ataxie"],"prefix":"10.1055","volume":"63","author":[{"given":"Annika","family":"Liebich","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Gesundheitswissenschaften, Studiengang Physiotherapie,\n                    Universit\u00e4t zu L\u00fcbeck"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leonie","family":"Hentzgen","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Gesundheitswissenschaften, Studiengang Physiotherapie,\n                    Universit\u00e4t zu L\u00fcbeck"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marion","family":"Nadke","sequence":"additional","affiliation":[{"name":"Vorstand, Deutsche Heredo-Ataxie-Gesellschaft e.V.,\n                    Stuttgart"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirstin-Friederike","family":"Heise","sequence":"additional","affiliation":[{"name":"Health Sciences and Research, Medical University of South Carolina,\n                    Charleston, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2024,10,22]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"165","DOI":"10.1038\/s41431-019-0508-0","article-title":"Estimating cumulative point prevalence of rare diseases: analysis of the\n                    Orphanet database","volume":"28","author":"S Nguengang Wakap","year":"2020","journal-title":"Eur J Hum Genet"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"625","DOI":"10.1007\/978-3-662-46892-0","volume-title":"Ataxien. 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