Was bedeutet eigentlich „palliativ“?
„Palliativ“ leitet sich ab vom lateinischen Wort „pallium“ und bedeutet Umhang bzw. Mantel. So wird ein „schützender Mantel“ um einen unheilbar kranken Patienten gelegt und seine Beschwerden werden dadurch gelindert. So ist Palliativmedizin die „lindernde Medizin“.
„Hospiz“ leitet sich ab vom lateinischen Wort „hospitium“, das Herberge bzw. Gastfreundschaft bedeutet. In diesem Sinne steht Hospiz für die liebevolle Begleitung und Betreuung „auf der letzten Reise“.
Die Weltgesundheitsorganisation (WHO) hat Palliativmedizin wie folgt definiert :
„Palliativmedizin dient der Verbesserung der Lebensqualität von Patienten und ihren Angehörigen, die mit einer lebensbedrohlichen Erkrankung konfrontiert sind. Dies geschieht durch Vorbeugung und Linderung von Leiden mittels frühzeitiger Erkennung, hochqualifizierter Beurteilung und Behandlung von Schmerzen und anderen Problemen psychischer, psychosozialer und spiritueller Natur“
Und was ist dann ein Palliativkind?
Ein pädiatrischer Palliativpatient ist …
… eine Person, bei der vor dem 18. Lebensjahr eine lebenslimitierende Erkrankung diagnostiziert wurde, an der er/sie wahrscheinlich vor dem 40. Lebensjahr versterben wird.
-Dr. Regina Jones
In Österreich sind viele Kinder von einer palliativen Erkrankungen betroffen und dennoch gibt es immer noch viel zu wenig Versorgung! Es gibt zu wenig Hospizteams speziell für Kinder und es gibt VIEL zu wenig Entlastungspflege! Hier wollen wir mitanpacken und die Situation in Österreich verbessern!
Für unsere Patienten. Aber auch für dich.
Denn palliativ ist ein viel umfassender Begriff – und eine palliative Erkrankung bei Kindern passiert viel häufiger als man denkt!
Leider ist niemand von uns ist sicher. Niemand von uns hat die Garantie für ein gesundes normales Leben für seine Kinder!
Ein Unfall, ein Zeckenbiss, ein Virus, eine Entzündung oder ein kaputtes Gen, wie es beim Tay-Sachs Syndrom der Fall ist, und es kann dein gesamtes Leben verändern. Es kann jeden treffen – auch dich!
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