20.500.12556/DKUM-93701 Izobraževalne poti dolgotrajno bolnih otrok s Prader-Willi sindromom magistrsko delo Educational pathways of chronically ill children with Prader-Willi syndrome Namen magistrskega dela je raziskati, kako dolgotrajna bolezen - Prader-Willi sindrom (PWS) vpliva na izobraževalne izkušnje otrok in kakovost življenja njihovih družin. Osrednji poudarek je na doživljanju staršev ob vključevanju otrok s PWS v vzgojno-izobraževalne ustanove, njihovi interakciji s strokovnimi delavci ter izzivih, ki se pojavljajo pri vključevanju otrok s PWS v izobraževalni sistem. V teoretičnem delu magistrskega dela predstavimo koncept inkluzije v slovenskem izobraževalnem sistemu, izzive in prakse vključevanja otrok s posebnimi potrebami (OPP), nato pa se osredotočamo na položaj dolgotrajno bolnih otrok (DOB), s poudarkom na otrocih s PWS. Opisujemo ključne značilnosti sindroma (govorno-jezikovne sposobnosti, prehranske posebnosti, kognitivni razvoj ter čustvene in vedenjske težave). Posebno pozornost namenjamo vlogi multidisciplinarnega tima in vplivu bolezni na družinsko dinamiko. Empirični del magistrskega dela temelji na kvalitativni analizi delno strukturiranih intervjujev s starši otrok s PWS. Rezultati raziskave kažejo, da PWS pomembno zaznamuje otrokovo izobraževalno pot. Starši poročajo o različnih oblikah prilagoditev, ki jih otroci potrebujejo v šolskem okolju. Kot pomemben dejavnik za uspešno vključevanje otrok s PWS v vzgojno-izobraževalni proces se izkaže sodelovanje med starši in šolo, ki omogoča pravočasno prepoznavanje težav ter skupno iskanje ustreznih rešitev. Poleg šolskih izzivov starši izpostavljajo vpliv PWS na celotno družinsko dinamiko in kakovost življenja. This master's thesis explores how a chronic illness - Prader-Willi Syndrome (PWS)- influences the educational experiences of children and the quality of life of their families. The primary focus is on parents’ perspectives regarding the inclusion of children with PWS in educational settings, their interactions with professionals, and the challenges encountered within the educational system. The theoretical part of the thesis outlines the concept of inclusion in the Slovenian education system, discusses the challenges and practices associated with educating children with special educational needs (SEN), and then narrows the focus to chronically ill children (CIC), particularly those with PWS. It describes the syndrome’s key characteristics—speech and language abilities, dietary needs, cognitive development, and emotional and behavioural challenges. Special emphasis is placed on the role of multidisciplinary teams and the broader impact of the illness on family dynamics. The empirical part is based on a qualitative analysis of semi-structured interviews with parents of children diagnosed with PWS. The findings reveal that PWS significantly affects the child’s educational journey. Parents report various adaptations needed within the school environment. Effective collaboration between parents and schools emerges as a crucial factor in facilitating successful inclusion, enabling timely identification of difficulties and the joint development of appropriate solutions. Beyond educational challenges, parents also highlight the profound influence of PWS on overall family life and well-being. Prader-Willi sindrom otroci s posebnimi potrebami dolgotrajno bolni otroci inkluzija izobraževalni sistem Prader-Willi Sydrome children with special educational needs chronically ill children inclusion educational system true true false Ž. Krajnc Slovenski jezik Angleški jezik Magistrsko delo/naloga 2025-07-15 12:20:59 2025-08-13 08:29:02 2025-08-14 03:30:08 0000-00-00 00:00:00 2025 0 Maribor 0 Maribor 1 spletni vir (1 datoteka PDF (XI, 77 str.)) 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 376-056.34(043.2) 245512451 MAG_Krajnc_Zanet_2025.pdf MAG_Krajnc_Zanet_2025.pdf 1 EBB0227126EAA036B7D27EDA44695CFA edf79572b1a2f867ac59f0783c958c1eaeb1feb81a0870416f77e260449cbd6d b170c8fe-657b-11f0-b85f-00155d000105 https://dk.um.si/Dokument.php?lang=slv&id=193826 Filozofska fakulteta 0 0 0