Zusammenfassung
Das Spektrum an lebenslimitierenden Erkrankungen im Kindesalter ist sehr breit gefächert. Es reicht von seltenen genetischen Erkrankungen, angeborenen/erworbenen Anomalien und (Mehrfach-) Behinderungen über neurologische Symptomenkomplexe bis hin zu Krebserkrankungen. Genauso weit sind auch das Altersspektrum pädiatrischer Palliativpatienten und so unterschiedlich sind die Versorgungsorte, an denen uns diese Patienten und ihre Familien begegnen. Das Kapitel beschreibt, wie eine gute palliative Versorgung gelingen kann - ob schon perinatal, in der Neonatologie, auf der pädiatrischen Intensivstation oder beim Übergang in das Erwachsenenleben. Zusätzlich bietet es viel Information zu den wichtigsten Themenkomplexen in der pädiatrischen Palliativversorgung, wie z. B. bei chromosomalen und metabolischen Störungen, neuro-muskulären Erkrankungen, schweren Mehrfachbehinderungen u. v. a. m. Der Fokus in diesem Kapitel liegt vermehrt auf den palliativ-psycho-sozialen Aspekten, detaillierte Angaben zur medikamentös-medizinischen Behandlung finden sich in der gesonderten Ausgabe Pädiatrische Palliativversorgung – Schmerzbehandlung und Symptomkontrolle.
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Besuchte Internetseite
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Literatur zum Abschn. 6.8. Epidermolysis bullosa
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Rellensmann, G. et al. (2021). Besondere Patientengruppen und praktische Herausforderungen. In: Zernikow, B. (eds) Pädiatrische Palliativversorgung – Grundlagen. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-61777-9_6
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