| Abstract | Hemofilija je nasljedna bolest koja dovodi do sklonosti krvarenja ubraja se u
rijetke bolesti, a zbog svoje specifičnosti se skrb za bolesnike s hemofilijom najčešće
provodi u specijaliziranim centrima. U Hrvatskoj od hemofilije boluje oko 450
bolesnika, od kojih oko 150 ima tešku kliničku sliku bolesti.
Cilj ovog preglednog rada je naglasiti važnost dobro organizirane skrbi
bolesnika s hemofilijom u Centru kao i doprinos visoke razine sestrinske skrbi za
bolesnika s ovom rijetkom bolesti.
U svrhu dokumentiranja stanja i promjena kod bolesnika u ovom diplomskom
radu izrađena je sestrinska dokumentacija koja se temelji na standardnoj sestrinskoj
dokumentaciji, a pregledom literature utvrđene su specifične potrebe bolesnika s
hemofilijom koje su implementirane u dokumentaciju. Izrađena dokumentacija
olakšava praćenje stanja bolesnika i pomaže prilikom personaliziranja liječenja
bolesnika s hemofilijom, te omogućava detaljan uvid u stanje bolesnika cijelom
multidisciplinarnom timu.
Sustavno praćenje i evidentiranje stanja bolesnika, gdje uvelike pomaže i
sestrinska dokumentacija, omogućava bolji uvid u stanje bolesnika i kvalitetu
njegova života, te ukazuje na raspoložive resurse u poboljšanju kvalitete zbrinjavanja
bolesnika s hemofilijom.
Medicinska sestra također pomaže u koordinaciji specijalističkih pregleda u
Centru za hemofiliju. Dobro educirana sestra svojim znanjem, vještinama i iskustvom
znatno skraćuje boravak bolesnika u Centru, upravlja edukacijom bolesnika i obitelji
te na taj način direktno utječe na poboljšanje kvalitete života bolesnika s hemofilijo |
| Abstract (english) | Haemophilia is an inherited disorder which belongs to a group of rare
diseases and, for its specificity, the patients with haemophilia are most frequently
treated in specialised centres. In Croatia, there are about 450 patients suffering from
haemophilia, of which about 150 show a severe clinical condition of the disease.
The aim of this review paper is to emphasize the importance of well-organised
treatment of patients with haemophilia, as well as the contribution of a high level of
nursing care for patients with this rare disorder.
In order to document conditions and changes in patients, in this thesis the
nursing documentation based on standard nursing documentation was prepared,
while the literature overview identified specific needs of patients with haemophilia
which were implemented in the documentation. Previously mentioned prepared
documentation facilitates the monitoring of a patient condition and contributes to the
personalisation of treatment of a patient with haemophilia, as well as provides the
entire multidisciplinary team with a detailed insight into a patient condition.
Regular monitoring and recording of a patient condition, where nursing
documentation is of a great importance as well, gives a better insight into a patient
condition, contributes to the improved quality of their life and indicates the available
resources in improving the quality of treatment of patients with haemophilia.
A nurse also helps to coordinate the specialized examinations at the
Treatment Centre. A well - educated nurse, applying the acquired knowledge, skills
and experience, shortens significantly a patient's stay at the Centre, manages the
education of patients and families and, in that way, directly improves the quality of
life of a patient with haemophilia. |
