20.500.12556/RUL-172953 Vloga medicinske sestre pri obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1 diplomsko delo The role of the nurse in the treatment of children and adolescents with neurofibromatosis type 1 diploma work Uvod: Nevrofibromatoza tipa 1 je dedna genetska motnja, ki prizadene živčni sistem in povzroča rast benignih tumorjev na perifernem in centralnem živčnem sistemu. V nekaterih primerih lahko ti tumorji postanejo maligni. Bolezen pogosto spremljajo tudi skeletne nepravilnosti, učne težave, motnje pozornosti ter vedenjski in socialni izzivi, ki pomembno vplivajo na kakovost življenja otrok in njihovih družin. Medicinske sestre imajo pomembno vlogo pri zdravstveni in psihosocialni obravnavi teh bolnikov. Namen: Namen diplomskega dela je raziskati vlogo medicinske sestre pri obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1 ter ugotoviti, s katerimi težavami se soočajo bolniki in njihovi starši. Metode dela: Uporabljena je bila deskriptivna metoda pregleda strokovne in znanstvene literature. Iskanje je potekalo od decembra 2023 do maja 2024. Literaturo smo iskali v podatkovnih bazah Google Scholar, CINAHL in Medline, pri čemer smo vključili 41 ustreznih znanstvenih virov, objavljenih v zadnjih desetih letih. Rezultati: Ugotovljeno je bilo, da se otroci in mladostniki z nevrofibromatozo tipa 1 soočajo s številnimi fizičnimi, psihološkimi in socialnimi izzivi, kot so bolečina, kožne spremembe, stigmatizacija, nizka samopodoba in socialna izključenost. Starši teh otrok pogosto doživljajo čustveno izčrpanost, stres in negotovost. Medicinske sestre pomembno prispevajo pri spremljanju simptomov, izobraževanju in svetovanju družinam ter zagotavljanju psihosocialne podpore. Razprava in zaključek: Medicinske sestre imajo ključno vlogo pri celostni obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1, saj poleg telesne oskrbe nudijo tudi čustveno podporo ter sodelujejo z različnimi strokovnjaki znotraj multidisciplinarnega tima. Večja vključenost medicinskih sester in širše ozaveščanje javnosti o nevrofibromatozi tipa 1 bi lahko dodatno pripomogla k izboljšanju kakovosti življenja teh bolnikov in njihovih družin. Introduction: Neurofibromatosis type 1 is a hereditary genetic disored that affects the nervous system and leads to the growth of benign tumors on the peripheral and central nervous system. In some cases, these tumors may become malignant. The disease is often accompanied by skeletal abnormalities, learning difficulties, attention disorders and behavioral and social challenges, all of wich significantly affect the quality of life of children and their families. Nurses play an important role in both the medical and psychosocial social care of these patients. Purpose: The purpose of this thesis is to investigate the role of nurses in the care of children and adolescents with neurofibromatosis type 1 and to identify the challenges faced by these patients and their parents. Methods: A descriptive method was used on a review of professional and scientific literature. The literature search was conducted between December 2023 and May 2024. Sources were identified in databases such as Google Scholar, CINAHL and Medline, resulting in 41 relevant scientific articles published in the last 10 years. Results: It was found that children and adolescents with neurofibromatosis type 1 face numerous physical, psychological and social challenges, such as pain, skin changes, stigmatization, low self-esteem and social exclusion. Parents of these children often experience emotional exhaustion, stress and uncertainty. Nurses play a key role in monitoring syptoms, educating and advising families and providing support. Discussion and conclusion: Nurses play a crucial role in the holistic care of children and adolescents with neurofibromatosis type 1. In additional to providing physical care, they offer emotional support and collaborate with various professionals as part of a multidisciplinary team. Greater involvement of nurses and broader public awareness of neurofibromatosis type 1 could contribute to improving the quality of life for these patients and their families. diplomska dela zdravstvena nega nevrofibromatoza tipa 1 otroštvo mladostništvo kakovost življenja diploma theses nursing care neurofibromatosis type 1 childhood adolescence quality of life true false false [C. Ribič] Slovenski jezik Angleški jezik Diplomsko delo/naloga 2025-09-12 07:45:54 2025-09-12 07:45:56 2025-10-29 03:38:14 0000-00-00 00:00:00 2025 0 Ljubljana 0 Ljubljana 33 str. 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616-083 149510 248754691 53336.pdf 53336.pdf 1 993DFCE20281FCB43CE088F50C135C84 0467e963557892ff8cba27d4ca3f5bda1428b1026a427022b69dcf745b77c03c 968bb52b-8f9b-11f0-9328-0050569b8976 https://repozitorij.uni-lj.si/Dokument.php?lang=slv&id=217088 Zdravstvena fakulteta 0 0 0