20.500.12556/DKUM-78367 Podpora družine mladostniku z downovim sindromom Family support for adolescent with down syndrom Družinske skupnosti, ki imajo v svoji sredi člana z Downovim sindromom, se v vsakdanjem življenju srečujejo s številnimi izzivi. Otrok in kasneje mladostnik z Downovim sindromom za svoj optimalen razvoj potrebuje ustrezno podporo, pomoč in vzpodbudo, v prvi vrsti s strani najožjih družinskih članov. Namen zaključnega dela je predstaviti Downov sindrom in skozi intervjuje ugotoviti, kakšna je stopnja podpore, ki jo je mladostnik s to diagnozo deležen s strani svoje družine. V zaključnem delu smo uporabili kvalitativno metodologijo dela. Pri teoretičnem delu smo uporabili opisno metodo dela ter iskali in analizirali znanstvene in strokovne vire, za zbiranje podatkov pa smo uporabili tehniko intervjuja. Ugotovili smo, da mladostnik z Downovim sindromom potrebuje veliko več podpore pri opravljanju življenjskih aktivnosti kot mladostnik brez omenjene bolezni. Po analizi treh intervjujev smo izpostavili proste kode, ki smo jih razvrstili v 82 podkategorij. Ugotovljeno je bilo, da mladostnik z Downovim sindromom s strani svoje družine potrebuje podporo pri vsakdanjih opravilih, zlasti tistih, ki zahtevajo uporabo fine motorike, in da so pomanjkanje informacij, nejasna navodila ter neodgovorjena vprašanja le nekatere izmed težav, s katerimi se srečujejo družine, ki želijo svojim otrokom z Downovim sindromom zagotoviti ustrezno podporo. Stopnja podpore, ki jo je deležen mladostnik z Downovim sindromom, je precej individualno pogojena z njegovo stopnjo samostojnosti. Pomembno je, da družine prejmejo dovolj ustreznega znanja in navodil, kako pomagati in podpreti takega otroka. Families that have a family member with Down syndrome face many challenges in everyday life. For his optimal development a child with Down syndrome needs support, help and encouragement, primarily from the closest family members. The purpose of final work is to introduce Down syndrome and with interviews discover what level of support an adolescent with Down syndrome receives from his or her family. In the final work we used a qualitative research method. In the theoretical part we used a descriptive method of work, we searched and analysed scientific and professional sources. The data were collected by interviews. With data analysing we found out that an adolescent with Down syndrome needs more support in everyday activities as an adolescent without the mentioned disease. After analysing three interviews we exposed the codes and sorted them in 82 subcategories. We found out that an adolescent with Down syndrome needs support from his family to carry out daily tasks, especially those that require use of fine motor skills. Families face many problems when trying to provide adequate support for their child with Down syndrome. Lack of information by staff, vague instructions and unanswered questions are only few of them. The level of support that an adolescent with Down syndrome receives, is individually conditioned by his degree of independence. It is important that families receive relevant knowledge and instructions how to help and support their child. Downov sindrom značilnosti Downovega sindroma podpora mladostniku z Downovim sindromom Down syndrome characteristics of Down syndrome support of adolescent with Down syndrome true false false [A. Sešel] Slovenski jezik Angleški jezik Diplomsko delo/naloga 2020-12-14 19:25:36 2021-03-09 11:57:14 2022-08-09 19:01:31 2020-12-16 03:22:57 2021 0 Maribor 0 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.899.6(043.2) 53636611 URN:SI:UM:DK:48CVH446 VS_Sesel_Ana_2020.pdf VS_Sesel_Ana_2020.pdf 1 17C8E1806A3E394DA86C7F8D93BB6EF2 0fe4f05d897168a3943afe4f9ee4c5ea7120a97599d535088028a6044fb6d440 0afd9260-7c12-11eb-bb7a-00155d0001ca 20.500.12556/dkum/cb68502d-2e64-4254-aad6-0a1e88cf9f87 https://dk.um.si/Dokument.php?lang=slv&id=148052 Fakulteta za zdravstvene vede 0 0 0