„Jsem jiný, jsem slaný… a umřu dříve“ (dítě/žák s cystickou fibrózou v edukačním prostředí)

Roč.28,č.2(2018)

Abstrakt

V současném pojetí společného vzdělávání může učitel vykonávat přímou pedagogickou činnost v diverzní společnosti „různých“ žáků. Mezi nimi mohou být rovněž žáci a žákyně s cystickou fibrózou (CF). Jde o nevyléčitelné, progredující a smrtelné onemocnění, které svým nositelům přináší četné zásahy a limitace v každodenních aktivitách, včetně školských. Cílem přehledové studie je analyzovat, popsat a interpretovat vybrané oblasti života dětí, žáků/žákyní a studentů/studentek s tímto onemocněním, které mohou zakládat „jinakost/odlišnost“ v edukačním procesu a prostředí. Metodický rámec byl naplněn analytickou, syntetickou a interpretační činností v podobě monografické procedury založené na rešeršní činnosti zahraničních odborných článků a studií v dostupných databázích. Mezi tematické oblasti, které mohou u osob s CF zakládat „jinakost/odlišnost“, byla zařazena témata symptomatologie CF, přístupu okolí (stigma/stigmatizace, viktimizace, postoje okolí apod.), dále subjektivity stavu (prožívání, osobní zkušenosti, strach ze smrti, strach z progrese onemocnění, úzkost, naděje, deprese, resilience, self-efficacy), oblast žáky s CF „vyžadované“ podpory (psychologické, psychosociální, emoční, vztahové, rodičovské apod.) a rovněž specifika výchovně-vzdělávacího procesu. „Jinakost/odlišnost“ popisovaná v rámci CF spočívá ve specifických potřebách žáků, které vyplývají z případných změn zdravotního stavu a postojů jejich okolí. Současný stav vzdělávání v našich podmínkách, který respektuje požadavek společného vzdělávání, by měl případné „jinakosti/odlišnosti“ a rozdílnosti „stírat“, a to primárně efektivní pregraduální přípravou učitelů a kontinuálním vzděláváním v této oblasti.


Klíčová slova:
inakost/odlišnost; cystická fibróza; limitace; strach; smrt; edukace; psychosociální podpora
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