Destigmatizacija epilepsije u djece kroz edukacijsko-rehabilitacijske kampove

master's thesis

• Title (english): Destigmatisation of epilepsy in children through education-rehabilitation camps
• Author: Kristina Kužnik
• Mentor: Tea Vukušić Rukavina (mentor)
• Committee member: Ognjen Brborović (predsjednik povjerenstva)
• Committee member: Ana Borovečki (član povjerenstva)
• Committee member: Tea Vukušić Rukavina (član povjerenstva)
• Granter: University of Zagreb; School of Medicine; (Department of Medical Sociology and Health Economics); Zagreb
• Defense date and country: 2016-09-27, Croatia
• Scientific / art field, discipline and subdiscipline: BIOMEDICINE AND HEALTHCARE; Clinical Medical Sciences; Pediatrics

Abstract

Edukacijsko – rehabilitacijski kampovi za djecu i adolescente oboljele od epilepsije organiziraju se širom svijeta i pokazali su se izuzetno korisnima kako za djecu samu, tako i za obitelj, kao i za njihovo školovanje i osamostaljenje (Cvitanović Šojat 2010). U Hrvatskoj je epilepsija kao kronična bolest velika nepoznanica za djecu koja boluju od te bolesti i njihove roditelje. Isto tako izražena je nedovoljna informiranost o postojanju edukacijsko rehabilitacijskih kampova za djecu s epilepsijom.
Cilj ovog istraživanja je ispitati razlike u znanju o epilepsiji djece polaznika edukacijsko rehabilitacijskih kampova i kako boravak u kampu doprinosi samostalnosti polaznika u daljnjem svakodnevnom životu s epilepsijom. U istraživanju su sudjelovala djeca i adolescenti s epilepsijom, polaznici Kampa 2011 i djeca i adolescenti s epilepsijom polaznici Kampa 2013. Sva navedena djeca kontroliraju svoju bolest u Klinikama za pedijatriju KBC Zagreb, KBC Sestre milosrdnice, Klinika za dječje bolesti Zagreb i u Poliklinici Sabol, a svi su članovi Hrvatske udruge za epilepsiju (HUE). U istraživanju je sudjelovalo ukupno 33 djece, 2011. godine njih 20-tero, a 2013. godine njih 18-tero, međutim je 5-tero djece sudjelovalo u oba kampa.
Obradom podataka utvrđeno je da je došlo do povećanja znanja o epilepsiji nakon kampa u skupini 2011.g. (t= -3,835; p<0,01), skupini 2013.g. (t= -7,721; p<0,01) te u obje skupine zajedno (t= - 6,981; p<0,01). Za nas je bilo osobito važno saznati da postoji stigma kod oboljelih od epilepsije s obzirom na tajenje podataka o dijagnozi od nastavnika (42% razrednik nije upoznat sa dijagnozom), od ostalih učenika (45% ne zna da im školski kolega ima epilepsiju), a neki nisu obavijestili o svojoj bolesti bilo koga u školi. Prema odgovorima u upitnku o prilagodbi na život s epilepsijom također se vidi da je jako izražena stigma u oboljele djece s epilepsijom.
Ovim radom prvi put je opširno prikazano postojanje edukacijsko rehabilitacijskih kampova za djecu s epilepsijom u Hrvatskoj, a dobivenim rezultatima u istraživanju prikazana je neophodna potreba za organizacijom istih u svrhu destigmatizacije što se potvrđuje i podacima iz svjetske literature.

Abstract (english)

Educational-rehabilitation camps for children and adolescents with epilepsy are organized throughout the world and have been shown very helpful for children and their families as well as for their education and independence (Cvitanović-Šojat 2010). In Croatia epilepsy as chronic disease is a big unknown for children with the disease and their parents. Insufficient information is available on existence of educational-rehabilitation camps for children with epilepsy.
Aim of this study is to evaluate differences in knowledge on epilepsy among children attending the camp and to evaluate how attending the camp enhances independence of children with epilepsy in their everyday life.
The study included children and adolescents with epilepsy who attended the Camp 2011 and Camp 2013. All the children were patients in Pediatric clinic KBC Zagreb, KBC Sestre milosrdnice, Clinic for children’s diseases Zagreb and in Sabol Polyclinic, and they were all members of Croatian epilepsy association. There were total of 33 children included in the study. 2011 there were 20 children and 2013 there were 18 children, among which five attended both camps. Statistical analysis showed there was increased knowledge on epilepsy after the camp in group from year 2011. (t= -3,835; p<0,01), in group from year 2013. (t= -7,721; p<0,01) and in both groups together (t= - 6,981; p<0,01). For us it was very important to find out there is still stigma with epilepsy as they were hiding the disease from the teachers (in 42% main teacher didn’t know the diagnosis), hiding from other students (45% didn’t know their peer had epilepsy), and some didn’t let anyone in school know about their disease. According to answers in the questionnaire on living with epilepsy there is very high stigma in children with epilepsy.
This study is the first one to extensively show existence of educational-rehabilitation camps for children with epilepsy in Croatia, and the results obtained show the need for continuation of the camps in order to destigmatize epilepsy, and this is shown in world literature as well.

• Keywords: edukacijsko-rehabilitacijski kamp; epilepsija; djeca; adolescenti; sestrinstvo
• Keywords (english): educational-rehabilitation camp; epilepsy; children; adolescents; nursing
• Language: croatian
• URN:NBN: urn:nbn:hr:105:269590
• Study programme: Title: Studies in Nursing; Study programme type: university; Study level: graduate; Academic / professional title: magistar/magistra sestrinstva (magistar/magistra sestrinstva)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access
• Created on: 2017-03-02 10:46:56