20.500.12556/DKUM-15153 Zdravstvena nega otroka z Angelmanovim sindromom Nursing care of a child with Angelman syndome Diplomsko delo z naslovom Zdravstvena nega otroka z Angelmanovim sindromom obravnava družino, ki ima otroka obolelega za Angelmanovim sindromom in pridruženim albinizmom, epilepsijo, hiperaktvnostjo in avtizmom. Namen je predstaviti življenje obolele 9-letne deklice, upoštevaje 14 osnovnih življenjskih aktivnostih po Virginiji Henderson. Metodologija raziskovanja. Uporabljena je bila kvalitativna metoda dela. Uporabili smo induktivni in deduktivni pristop. Informacije smo pridobili z intervjujem staršev obolele deklice in z opazovanjem deklice na njenem domu. Intervju smo nato vsebinsko analizirali. Podatke smo obdelali po konceptualnem modelu Virginije Henderson. Dobljeni podatki so bili uporabljeni zgolj za namen raziskave. Rezultati. Ugotovili smo, da imajo starši zelo veliko vlogo pri razvoju otroka s posebnimi potrebami, saj deklica z Angelmanovim sindromom potrebuje pomoč staršev pri večini osnovnih življenjskih aktivnosti: prehranjevanje in pitje, izločanje in odvajanje, gibanje in ustrezna lega, spanje in počitek, vzdrževanje normalne telesne temperature, osebna higiena in urejenost, izogibanje nevarnostim v okolju, komunikacija in učenje, razvedrilo in rekreacija. Vloga medicinske sestre je predvsem zdravstveno-vzgojna in vzpodbujevalna. Sklep. V zdravstveni negi je zelo pomembno sodelovanje staršev, saj le uspešno sodelovanje med starši in zdravstvenimi delavci tvori celoto za uspešno integracijo otrok s posebnimi potrebami v družbo. Starši, ki imajo otroka obolelega za Angelmanovim sindromom, ga morajo spremljati vse življenje, ga vzpodbujati, motivirati ter mu nuditi pomoč v aktivnostih, ki jih sam ni zmožen opravljati. Starši potrebujejo pomoč in nasvete zdravstvenih delavcev, podporo, motivacijo ter spodbudo. Diploma thesis, entitled Nursing Care of a Child with Angelman Syndrome, discusses a family with a child suffering from Angelman syndrome and the accompanying albinism, epilepsy, hyperactivity, and autism. The purpose is to present the life of a diseased 10-year-old girl, bearing in mind Virginia Henderson’s 14 basic life activities. Research methodology. A qualitative work method was used. Inductive and deductive approaches were applied. Information was obtained by interviewing the parents of the diseased girl and by monitoring the girl at her home. The content of the interview was afterwards analysed. Data was processed following Virginia Henderson’s conceptual model. The data obtained was used solely for the purpose of this research. Results. It has been determined that parents play a great role in the development of a child with special needs, since a girl with Angelman syndrome needs her parents’ help with the majority of the basic life activities: eating and drinking; excretion and defecation; movement and proper positioning; sleep and rest; maintaining normal body temperature; personal hygiene and tidiness; avoiding dangers in the environment; communication and learning; entertainment and recreation. In this case, the role of the nurse is primarily a health educating and motivational one. Conclusion. Parents’ co-operation is very important in nursing care, since only successful co-operation between parents and health professionals can enable successful integration of children with special needs into society. Parents of children suffering from Angelman syndrome have to monitor these children all their lives, encourage them, motivate them, and help them with activities that they cannot perform on their own. Parents need the help and advice of health professionals, support, motivation and encouragement. zdravstvena nega otrok konceptualni model Virginije Henderson Angelmanov sindrom albinizem epilepsija hiperaktivnost avtizem študija primera. nursing care child Virginia Henderson’s conceptual model Angelman syndrome albinism epilepsy hyperactivity autism case study. true true false [N. Hozjan] Slovenski jezik Angleški jezik Diplomsko delo 2010-08-25 22:41:59 2010-10-05 14:59:32 2022-04-12 22:37:09 2023-12-18 03:33:15 2010 0 Maribor 0 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.89-053.2 1630116 URN:SI:UM:DK:COEXVRST VS_Hozjan_Nastasija_2010.pdf VS_Hozjan_Nastasija_2010.pdf 1 D1DBBF1466053E4B811D6F0273B885B3 031ac426a63e4092ea1028ec95f35ba22a5c4776d42a4c1a35b96597ed4768cd 54c5af38-7c04-11eb-bb7a-00155d0001ca 20.500.12556/dkum/ccfbbd1e-f2e0-43e6-ac20-b1d4e4489ce0 https://dk.um.si/Dokument.php?lang=slv&id=16541 Fakulteta za zdravstvene vede 0 0 0