20.500.12556/DKUM-79416 Vpliv Downovega sindroma pri otroku na življenje v družini The impact of Down syndrome in a child on family life Uvod: Downov sindrom je ena najpogostejših kromosomskih motenj, ki starše otrok sprva prizadane in popolnoma spremeni njihovo življenje. Tak otrok potrebuje za svoj optimalni razvoj ustrezno podporo, pomoč, ljubezen in vzpodbudo, ki mu jo lahko nudita le starša. Namen zaključnega dela je podrobneje predstaviti Downov sindrom in skozi raziskavo ugotoviti, kakšno je življenje z otrokom z Downovim sindromom ter kakšna je kakovost življenja staršev. Metode: V zaključnem delu smo uporabili kvantitativno metodo dela, medtem ko pri teoretičnem delu pa opisno metodo dela. Kot instrument za zbiranje podatkov smo uporabili lasten strukturiran anketni vprašalnik, ki so ga izpolnili starši otrok z Downovim sindromom. Rezultate smo statistično obdelali s pomočjo programa Microsoft Excel in jih predstavili v obliki grafov. Rezultati: Glede na rezultate ankete smo ugotovili, da imajo starši otrok z Downovim sindromom relativno slabšo kakovost življenja. Ta je odvisna predvsem od otrokovega stanja, starosti ter prizadetosti, kakor tudi podpore družine in širše skupnosti. Kljub temu, so bili starši mnenja, da so otroci z Downovim sindromom edinstveni. Razprava in sklep: Na temo Downovega sindroma je znanih kar veliko informacij, vendar kljub temu premalo. Premalo pozornosti se posveča staršem otrok z Downovim sindromom, saj ravno ti potrebujejo največ pomoči in podpore, da lahko ustrezno skrbijo zanje. Introduction: Down syndrome is one of the most common chromosomal disorders that parents of children initially hurt and change their lives completely. Such a child needs appropriate support, assistance, love and encouragement for his/her optimal development, whic only parents can offer him/her. The purpose of the final work is to present Down's syndrome in more detail and to determine through research what life is like with a child with Down syndrome and what the quality of life of the parents is. Methods: In the final part we used a quantitative method of work, and in the theoretical part a descriptive method of work. As a data collection instrument, we used our own structured survey questionnaire, which was completed by parents of children with Down syndrome. The results were statistically processed using Microsoft Excel and presented in graphs. Results: Based on the results of the survey, we found that parents of children with Down syndrome have a relatively poorer quality of life. This depends mainly on the child's condition, age and disability, as well as the support of the family and the wider community. However, parents were nonetheless of the opinion that children with Down syndrome are unique. Discussion and conclusions: A lot of information is known about Down syndrome, but still not enough. In particular, too little attention is paid to the parents of children with Down syndrome, as they are the ones who need the most help and support to be able to take proper care of them. družina otrok z Downovim sindromom kakovost življenja staršev family children with Down syndrome quality of life of parents true false false [D. Čeh] Slovenski jezik Angleški jezik Diplomsko delo/naloga 2021-06-27 18:54:22 2021-10-01 10:04:03 2022-08-09 20:32:27 0000-00-00 00:00:00 2021 0 Maribor 0 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.899.6(043.2) 78544387 VS_Ceh_Danijela_2021.pdf VS_Ceh_Danijela_2021.pdf 1 A053BED8AEE0D79EB996BC5253BADC07 d36124438565f2dd952b209ca5a6e000858197fb9152269d821c73342749dacc b5d96efe-19dd-11ec-9280-00155d581298 20.500.12556/dkum/95dcff1a-9634-4227-8a48-fb6a8e74f15f https://dk.um.si/Dokument.php?lang=slv&id=154176 Fakulteta za zdravstvene vede 0 0 0