Subjective assessment of the quality of life of a family with a person with special needs during distance learning

Magistrsko delo je predstavljeno v luči aktualnih razmer v času, ko je izobraževanje v slovenskem izobraževalnem sistemu zaradi pojava virusa SARS-CoV-2 in t. i. epidemije covid-19 potekalo na daljavo. V tem času sta se dinamika in kakovost življenja družin šoloobveznih otrok spremenili. Ugotovljeno je bilo, da je kakovost življenja oseb s posebnimi potrebami in njihovih družin odvisna tako od stabilnega družinskega okolja, kot tudi od širšega okolja v obliki podpore strokovnih služb in lastnega udejstvovanja. Na kakovost življenja otrok in mladostnikov imajo torej velik vpliv tudi vrstniki in šola. V uvodu magistrskega dela so predstavljeni pojmi, povezani s posebnimi potrebami. Posebej je definirana cerebralna paraliza in opredeljena družina osebe s posebnimi potrebami. V nadaljevanju so navedeni definicija, kazalniki in področja kakovosti življenja, zajeta pa sta tudi kakovost življenja otrok in mladostnikov s cerebralno paralizo ter kakovost življenja družine otroka s posebnimi potrebami. Nazadnje je opisano še izobraževanje na daljavo. Pri tem so predstavljeni tudi nekateri rezultati raziskav, ki so bile že narejene na področju izobraževanja na daljavo v času epidemije covid-19, v povezavi z določenimi področji kakovosti življenja. V empiričnem delu smo s študijo primera štiričlanske družine osebe s posebnimi potrebami z uporabo kvalitativne metodologije dobili vpogled v njeno subjektivno oceno kakovosti življenja v času, ko je izobraževanje potekalo na daljavo. Rezultati so pokazali tri izstopajoča področja kakovosti življenja, in sicer psihično počutje, samoodločanje in materialno blaginjo, pri čemer sta področji psihično počutje in materialna blaginja višje ocenjeni področji, področje samoodločanje pa nižje. Primerjava odgovorov staršev je pokazala, da starš, ki je več časa preživel z otrokom doma, kakovost življenja ocenjuje le malo višje od starša, ki je s svojim otrokom preživel v povprečju en dan na teden manj. Tudi pri primerjavi njunih odgovorov so se največje razlike pokazale na področjih psihičnega počutja, samoodločanja in materialne blaginje.The master\u27s thesis is presented in the light of the current situation at a time when education in Slovenia was carried out in the form of distance learning, due to the emergence of the SARS-CoV-2 virus and the so-called COVID-19 epidemic. During this time, the dynamics and quality of life of families with children of school-age have changed. It has been found that the quality of life of people with special needs and their families depends on a stable family environment, as well as on the wider environment in the form of support from professional services and own active engagement. Therefore, peers and school also have a strong influence on the quality of life of children and adolescents. In the introduction to the master\u27s thesis, the concepts related to special needs are presented. Cerebral palsy and the family of a person with special needs is specifically defined. In the following part, the definition, indicators and areas of quality of life are listed. The quality of life of children and adolescents with cerebral palsy and the quality of life of the family of a child with special needs included as well. Finally, distance learning is described. Some results of research that has already been carried out in the field of distance learning during the COVID-19 epidemic, in connection with certain areas of quality of life, are also presented. In the empirical part, we performed a case study of a family of four of a person with special needs. By using a qualitative methodology, we gained insight into their subjective assessment of quality of life in the period of distance learning. The results showed three notable areas of quality of life, namely mental well-being, self-determination and material well-being, whereby the areas of mental well-being and material well-being were rated higher and the area of self-determination was rated lower. A comparison of the parents’ responses showed that the parent who spent more time at home with the child rated the quality of life only slightly higher than the parent who spent on average one day a week less with their child. When comparing their responses, the greatest differences were again found in the areas of mental well-being, self-determination, and material well-being