{"id":11749,"date":"2023-01-17T00:23:00","date_gmt":"2023-01-17T00:23:00","guid":{"rendered":"https:\/\/dupmecp2.eu\/untersuchung-der-belastung-von-pflegekraeften-bei-mecp2-genduplikation-syndrom\/"},"modified":"2023-01-18T10:18:19","modified_gmt":"2023-01-18T10:18:19","slug":"badania-nad-obnizeniem-poziomu-pflegekraeften-w-zespole-genduplikacji-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/badania-nad-obnizeniem-poziomu-pflegekraeften-w-zespole-genduplikacji-mecp2\/","title":{"rendered":"Badanie obci\u0105\u017cenia pacjent\u00f3w z zespo\u0142em genduplikacji MECP2"},"content":{"rendered":"<p><strong>Zesp\u00f3\u0142 genduplikacji MECP2 (MDS) jest powa\u017cnym zaburzeniem neurogenetycznym, kt\u00f3re prowadzi zar\u00f3wno do zaburze\u0144 psychicznych, jak i motorycznych. Dzieci z tym zespo\u0142em nie mog\u0105 \u017cy\u0107 samodzielnie i s\u0105 w du\u017cym stopniu zale\u017cne od lekarzy i opiekun\u00f3w.<\/strong><\/p>\n\n<p><strong>Dla tych ostatnich opieka nad dzie\u0107mi z powa\u017cnymi zaburzeniami mo\u017ce by\u0107 ogromnym wyzwaniem, poniewa\u017c musz\u0105 one pozosta\u0107 stabilne i nie otrzymuj\u0105 \u017cadnego wsparcia.<\/strong><\/p>\n\n<p><strong>Mimo, \u017ce miejsce zamieszkania personelu medycznego jest bardzo wa\u017cne, cz\u0119sto nie jest to parametr s\u0142u\u017c\u0105cy poprawie stanu zdrowia os\u00f3b z MDS. W zwi\u0105zku z tym, wzmocnienie personelu medycznego mo\u017ce poprawi\u0107 nie tylko stan zdrowia tej populacji pacjent\u00f3w, ale tak\u017ce jako\u015b\u0107 \u017cycia ich rodzin, co jest bardzo wa\u017cne dla ca\u0142ego spo\u0142ecze\u0144stwa.<\/strong><\/p>\n\n<p><strong>Dr Pehlivan i jego zesp\u00f3\u0142 badali pocz\u0105tkowo kwesti\u0119 oceny stanu zdrowia pacjent\u00f3w z zespo\u0142em genduplikacji MECP2. Pocz\u0105tkowo opracowali oni zestaw kryteri\u00f3w oceny, aby okre\u015bli\u0107 wp\u0142yw istotnych zaburze\u0144, z kt\u00f3rymi konfrontuj\u0105 si\u0119 pacjenci. Diese Belastungsskala wurde verwendet, um die Korrelation zwischen MDS-Merkmalen und erh\u00f6hter Belastung zuermitteln. Forscherowie zidentyfikowali r\u00f3\u017cne czynniki, kt\u00f3re mog\u0105 mie\u0107 wp\u0142yw na wzrost stresu, i ocenili ich wp\u0142yw za pomoc\u0105 Belastungsskala. Zu den untersuchten Faktoren geh\u00f6rten finanzielles Wohlergehen, Zugang zu Experten, angemessene Behandlung, verk\u00fcrzte Lebenserwartung, Verz\u00f6gerung bei Gentests and Herausforderungen im Umgang mit Familienmitgliedern und Sozialleben.<\/strong><\/p>\n\n<p><strong>W badaniu, kt\u00f3re zosta\u0142o przeprowadzone mi\u0119dzy wrze\u015bniem a listopadem 2020 r., wzi\u0119\u0142o udzia\u0142 101 pacjent\u00f3w na ca\u0142ym \u015bwiecie. Wiek pacjent\u00f3w z MDS wynosi\u0142 od 0 do 51 lat.<\/strong><\/p>\n\n<p><strong>Die Studie ergab Folgendes:<\/strong><\/p>\n\n<p><strong>- Opieka nad pacjentami z MDS powoduje u nich silny niepok\u00f3j, zaburzenia emocjonalne i depresj\u0119. Te uczucia powoduj\u0105 u nich wysoki poziom stresu.<\/strong><\/p>\n\n<p><strong>- Wynika z tego, \u017ce u pacjent\u00f3w z MDS nie obserwuje si\u0119 istotnego wp\u0142ywu obci\u0105\u017cenia na wyst\u0119powanie padaczki. Verstopfung, Infektionen, Mobilit\u00e4t, Alter des MDS-Patienten or des Pflegepersonals sowie die Dauer der Pflege hatten keinen signifikanten Einfluss auf die Belastung. Chocia\u017c naukowcy starali si\u0119 zidentyfikowa\u0107 specyficzne objawy lub choroby, nie mo\u017cna wykluczy\u0107, \u017ce po\u0142\u0105czenie wszystkich czynnik\u00f3w ma wp\u0142yw na popraw\u0119 stanu zdrowia pacjent\u00f3w.<\/strong><\/p>\n\n<p><strong>- O ile istniej\u0105 wyra\u017ane r\u00f3\u017cnice mi\u0119dzy systemami opieki zdrowotnej, o tyle geograficzne zr\u00f3\u017cnicowanie pacjent\u00f3w z MDS i ich pacjent\u00f3w nie mia\u0142o \u017cadnego wp\u0142ywu na warto\u015b\u0107 obci\u0105\u017cenia.<\/strong><\/p>\n\n<p><em>Ocena obci\u0105\u017cenia opiekun\u00f3w zespo\u0142em duplikacji MECP2 D. Pehlivan et al. Pediatr. Neurol. 2022 Aug; 133: 1-8 (10.1016\/j.pediatrneurol.2022.05.008)<\/em><\/p>\n\n<p><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p><\/p>\n\n<p><strong>ZUSAMMENFASSUNG DES ARTIKELS:<\/strong><\/p>\n\n<p><strong>Hintergrund:<\/strong> Zesp\u00f3\u0142 duplikacji MECP2 (MDS) jest rzadkim schorzeniem neurogenetycznym, w kt\u00f3rym wyst\u0119puj\u0105 zaburzenia rozwoju neurologicznego, padaczka nawracaj\u0105ca, upo\u015bledzenie funkcji oraz zaburzenia czynno\u015bciowe przewodu pokarmowego. Aufgrund der schwerwiegenden klinischen Probleme und lebenslangen Behinderungen von Kindern mit dieser St\u00f6rung sind wir davon ausgegangen, dass die Belastung f\u00fcr die Eltern\/Betreuer dieser Kinder erheblich ist. Nie ma jednak doniesie\u0144 na temat wp\u0142ywu na opiekun\u00f3w os\u00f3b z MDS.<\/p>\n\n<p><strong>Methoden:<\/strong> Opracowali\u015bmy i zweryfikowali\u015bmy narz\u0119dzie Belastungsskala, aby zbada\u0107 potrzeby, z kt\u00f3rymi borykaj\u0105 si\u0119 opiekunowie dzieci i dzieci z MDS, oraz aby okre\u015bli\u0107 czynniki, kt\u00f3re mog\u0105 pom\u00f3c w zapewnieniu opieki nad opiekunem. Zgodnie z ustaw\u0105 o przeno\u015bno\u015bci i odpowiedzialno\u015bci w ubezpieczeniach zdrowotnych (Health Insurance Portability and Accountability Act) utworzyli\u015bmy Rejestr pacjent\u00f3w dla rodzin z MDS i poprzez ten Rejestr przeprowadzamy Umfrage w celu zapewnienia opieki nad pacjentem.<\/p>\n\n<p><strong>Finansowanie:<\/strong> Spo\u015br\u00f3d 237 wybranych pyta\u0144, 101 by\u0142o istotnych dla badania. Wir stellten fest, dass ein erh\u00f6htes Ma\u00df an selbst wahrgenommener Angst, Depression und emotionaler Ersch\u00f6pfung bei den pflegenden Angeh\u00f6rigen mit h\u00f6heren Belastungswerten korrelierte. Padaczka by\u0142a jedynym objawem klinicznym, kt\u00f3ry powodowa\u0142 zwi\u0119kszone obra\u017cenia u personelu piel\u0119gniarskiego os\u00f3b z MDS. Dar\u00fcber hinaus wurde eine h\u00f6here Belastung bei hispanischen Pflegern festgestellt. Czas trwania opieki by\u0142 ujemnie skorelowany z ci\u0119\u017cko\u015bci\u0105 uszkodze\u0144.<\/p>\n\n<p><strong>Wyniki:<\/strong> Jest to pierwsze badanie maj\u0105ce na celu zbadanie stanu zdrowia os\u00f3b z MDS i zidentyfikowanie szeregu czynnik\u00f3w, kt\u00f3re przyczyniaj\u0105 si\u0119 do poprawy ich zdrowia. Umgang mit diesen Faktoren hat das Potenzial, die Gesundheit von Menschen mit MDS zu verbessern und zum Wohlergehen der Pflegenden beizutragen.<\/p>\n\n<p><\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p><\/p>\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/www.pedneur.com\/article\/S0887-8994(22)00089-3\/fulltext\" style=\"border-radius:10px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Publikation ansehen<\/a><\/div>\n<\/div>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Das MECP2 Genduplikation Syndrom (MDS) ist eine fortschreitende neurogenetische Erkrankung, die sowohl zu geistigen als auch zu motorischen Behinderungen f\u00fchrt. Kinder mit diesem Syndrom k\u00f6nnen nicht selbstst\u00e4ndig leben und sind [&hellip;]<\/p>","protected":false},"author":1,"featured_media":11716,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[58],"tags":[],"class_list":["post-11749","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-publikationen"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Untersuchung der Belastung von Pflegekr\u00e4ften bei MECP2 Genduplikation Syndrom - DupMECP2<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/pl\/badania-nad-obnizeniem-poziomu-pflegekraeften-w-zespole-genduplikacji-mecp2\/?lang=de\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Untersuchung der Belastung von Pflegekr\u00e4ften bei MECP2 Genduplikation Syndrom - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Das MECP2 Genduplikation Syndrom (MDS) ist eine fortschreitende neurogenetische Erkrankung, die sowohl zu geistigen als auch zu motorischen Behinderungen f\u00fchrt. 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