Pomoč staršem otroka z Aspergerjevim sindromom

• Main Author: Vrhovnik, Manca
• Other Authors: Žgur, Erna
• Format: Master Thesis
• Language: Slovenian
• Published: 2019
• Subjects: Aspergerjev sindrom; Asperger's syndrome; sami
• Online Access: https://repozitorij.uni-lj.si/IzpisGradiva.php?id=109056; https://repozitorij.uni-lj.si/Dokument.php?id=120447&dn=; https://plus.si.cobiss.net/opac7/bib/12553545 ?lang=sl

V magistrskem delu je raziskano, kako se starši soočajo z življenjem z otrokom z Aspergerjevim sindromom ter na katerih področjih potrebujejo največ pomoči in podpore. V teoretičnem delu smo opredelili avtizem in Aspergerjev sindrom. Predstavili smo teoretična spoznanja, kako se družine soočajo z otrokom z avtistično motnjo. Opisali smo glavne potrebe, ki jih takšne družine imajo, sodelovanje z različnimi strokovnjaki ter vpliv motnje na partnerski odnos staršev. Našteli smo možne oblike pomoči specialnega in rehabilitacijskega pedagoga, preko katerih se lahko vključuje v delo z družino in aktualne organizacije ter društva, kamor se starši lahko obrnejo po pomoč in podporo. V empiričnem delu smo na podlagi teoretičnih spoznanj in na podlagi lastnih izkušenj dela z njimi pripravili vprašalnik za starše petih otrok z Aspergerjevim sindromom, ki obiskujejo izobraževalne programe s prilagojenim izvajanjem in dodatno strokovno pomočjo. Opravljeni so bili pol strukturirani intervjuji, nato pa smo podatke obdelali s pomočjo kvalitativne analize in sicer s pomočjo odprtega kodiranja podatkov. Rezultate smo predstavili opisno. Ugotovili smo, da se starši različno spoprijemajo z dejstvom, da imajo otroka z Aspergerjevim sindromom, pri tem pa si pomagajo tako s formalnimi kot neformalnimi oblikami pomoči. Starši kot težave izpostavijo tudi pomanjkanje informacij ter pomoči in podpore doma. Želijo si strukturirane pomoči in podpore s strani strokovnih delavcev ter več praktičnega znanja. Pogrešajo različne oblike dejavnosti kot na primer večdnevne počitnice ali tabore, ki bi bili namenjeni otrokom, sami pa bi imeli medtem možnost sprostitve. Prav tako vse starše skrbi otrokova prihodnost ter količina pomoči in podpore, ki jo bodo otroci prejeli v najstniškem in odraslem obdobju. In the following master's thesis, we made research, how parents who have children with Asperger's syndrome, deal with their lives, and in which areas they need most help and support. In the theoretical part, we defined Autism and Asperger syndrome. We presented the theoretical findings, how families deal with a child with Asperger syndrome. We described the main needs which these families have, their cooperation with different experts and an influence which this disorder has on the relationship between parents. We listed all possible forms of the help of special and rehabilitation pedagogues, where parents can get help and support. In the empirical part, we prepared - on the basis of our own experiences with five children with Asperger's syndrome – a questionnaire for parents. These children attend education programs with adjusted pursuance and with additional professional help. We made half-structured interviews. Then, we processed the chat with the help of the quantitative analysis, i. e. with the help o fan open coding of the data. The results were presented descriptively. We found out that parents deal differently with the fact that they have a child with Asperger's syndrome. They help themselves with formal and informal forms of help. Parents stress the following problems: the lack of information, help, and support at home. They want to get structured help and support from experts and more practical knowledge. They miss different types of activities, e. g. holidays and camps which are meant for these children. Meanwhile, they could have an opportunity to relax. They are also concerned about the children's future and the quantity of help and support these children get during the teenage years and adulthood.