20.500.12556/DKUM-16737 Zdravstvena nega pri bolnikih s hemofilijo Role of nursing by the patients with haemophilia V diplomskem delu smo predstavili vlogo medicinske sestre pri hemofilikih ter značilnosti hemofilije in von Willebrandove bolezni. Predstavljene so tudi najpogostejše težave pri hemofiliji A in B ter von Willebrandove bolezni. V drugem delu so predstavljeni rezultati raziskave, ki smo jo izvedli s pomočjo predsednika Jožeta Faganela - društva hemofilikov Slovenije, ki je dal soglasje in zdravstvene dokumentalistke Rajke Bavčar, ki je izvedla anketo zaradi zaupnosti podatkov hemofilikov. Diplomsko delo je raziskovalno delo, ki vključuje hemofilike in bolnike z von Willebrandovi boleznijo, ki so sodelovali z izpolnjevanjem anketnih vprašalnikov. Nekatere ankete so bila opravljene v UKC Ljubljana na hematološkem oddelku, nekatere pa drugod po Sloveniji preko pošte Slovenije (na domu). Namen raziskave je bil ugotoviti, v kolikšni meri bolniki poznajo svojo bolezen in kako se z njo spoprijemajo. Rezultate smo pridobili z vprašalnikom odprtega in zaprtega tipa, razdeljenim med 30 naključno izbranih bolnikov, vrnjenih anonimnih anket smo dobili 24. Dobljene rezultate smo preučili in grafično prikazali. Rezultati so pokazali, da je najpogostejša hemofilija A 16 (66,67%). Ugotovili smo, da so bolniki s hemofilijo A, s hemofilijo B ter bolniki z von Willebrandovo boleznijo precej samostojni, to pomeni, da je vključenost medicinske sestre zelo velika. In our dissertation we introduce the role of a nurse caring for the hemophiliacs and features of hemophilia and von Willebrand’s disease. We also introduce the most common problems with hemophilia A, hemophilia B and von Willebrand’s disease. In the other part we introduce the results of the research that we made with the help of a president association of hemophiliacs of Slovenia mr. Jože Faganel. He gave agreement and health documents of Rajka Bavčar . She did the survey, because of confidentiality of data of hemophiliacs. A dissertation is a research work that takes part of hemophiliacs and patients with von Willebrand’s disease, which cooperated in survey. Some surveys were made in UKC Ljubljana on haematology department, some of them in the other parts of Slovenia by mail or at home. Intention of research was to find out how much patients know their disease and how do they cope with it. We get the results with open and closed type of questionnaires which we distributed to 30 random chosen patients. 24 questionnaires where returned. These results where visually and graphically interpreted. The results show us, that the most frequent is hemophilia A16 (66,67%). We found out that the patients with hemophilia A, B and with von Willebrand’s disease are very much independent and work of a nurse, caring for them is very important. hemofilija A hemofilija B hemofilik von Willebrandova bolezen društvo hemofilikov Slovenije medicinska sestra. hemophilia A hemophilia B hemophiliacs von Willebrand's disease Haemophilia Society of Slovenia nurse. true true false [S. Granfola] Slovenski jezik Angleški jezik Diplomsko delo 2010-11-16 08:05:46 2011-01-11 12:11:30 2022-04-13 08:52:08 2023-12-21 03:15:04 2010 0 Maribor 0 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.151.5-083 1662116 URN:SI:UM:DK:6J99IKKP VS_Granfola_Sasa_2010.pdf VS_Granfola_Sasa_2010.pdf 1 026757A2760625D1D014C11F5541B8E2 fb3f128e26a03317ece627bb0933ec3fdb312c1045f5131d1bfae4aab19c5826 b7931ae0-7c04-11eb-bb7a-00155d0001ca 20.500.12556/dkum/1d04a00e-8764-4860-8d24-48f345dbe601 https://dk.um.si/Dokument.php?lang=slv&id=19117 Fakulteta za zdravstvene vede 0 0 0