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Title:Življenje bolnika z bulozno epidermolizo
Authors:ID Modrijan, Urban (Author)
ID Nerat, Jasmina (Mentor) More about this mentor... New window
ID Trčko, Katarina (Comentor)
Files:.pdf VS_Modrijan_Urban_2019.pdf (457,45 KB)
MD5: 0E3355DE51D71D239CA52DDB4C68F2CB
PID: 20.500.12556/dkum/f51bddfc-1e8c-4589-b7f5-c910770b79ee
 
Language:Slovenian
Work type:Bachelor thesis/paper
Typology:2.11 - Undergraduate Thesis
Organization:FZV - Faculty of Health Sciences
Abstract:Bulozna epidermoliza je dedna kožna bolezen, ki prizadane le peščico ljudi po vsem svetu. Za bolnike z bulozno epidermolizo pravimo, da imajo kožo tanko kot metuljeva krila, saj se bolezen kaže z erozijami in ranami na koži in sluznicah. Bolezen zajema tudi druge sistemske probleme, ki so odvisni od vrste in stopnje bolezni. Namen raziskave je ugotoviti, kakšno je vsakdanje življenje bolnika z bulozno epidermolizo, izpostaviti negovalne probleme pri osnovnih življenjskih aktivnostih ter raziskati, kako se bolnik sooča s težavami, ki so povezane z njegovo boleznijo. Uporabili smo delu smo uporabili kvalitativno raziskovalno metodologijo in opisno metodo dela. Podatke smo pridobili z intervjujem bolnice z bulozno epidermolizo na osnovi delno strukturiranega vprašalnika. Pri bolnici smo izpostavili bolečino kot enega glavnih problemov. Z večjimi težavami se bolnica sooča tudi pri prehranjevanju in pitju, saj je sluznica prebavnega trakta močno spremenjena. Izogibati se mora dejavnikom okolja, kot so spremembe temperature, poškodbe in okužbe, saj ti poslabšajo bolezenske znake. Kot posebno problematiko smo izpostavili mentalno zdravje, saj se je bolnica, kot tudi drugi primeri iz literature, soočala z nizko samopodobo, neprimernimi socialnimi interakcijami in anksioznostjo. Iz obravnavanega primera in analizirane literature smo razbrali, da bolniki z bulozno epidermolizo natančno poznajo svojo bolezen in kako se z njo soočati v vsakdanjem življenju. Raziskave so pokazale, da so pomanjkljivosti predvsem na področju nudenja podpore bolnikovi družini in skrbi za bolnikovo mentalno zdravje, ter zdravje ostalih članov družine. Vloga zdravstvenih delavcev je predvsem učenje in podpora bolniku in njegovi družini.
Keywords:kožni mehurji, lajšanje bolečine, oskrba ran, psihosocialni vpliv, finančna obremenitev.
Place of publishing:Maribor
Publisher:[U. Modrijan]
Year of publishing:2019
PID:20.500.12556/DKUM-73356 New window
UDC:616.529.1(043.2)
COBISS.SI-ID:2490788 New window
NUK URN:URN:SI:UM:DK:1IKSL2I9
Publication date in DKUM:15.05.2019
Views:1731
Downloads:139
Metadata:XML RDF-CHPDL DC-XML DC-RDF
Categories:FZV
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Licences

License:CC BY 4.0, Creative Commons Attribution 4.0 International
Link:http://creativecommons.org/licenses/by/4.0/
Description:This is the standard Creative Commons license that gives others maximum freedom to do what they want with the work as long as they credit the author.
Licensing start date:28.03.2019

Secondary language

Language:English
Title:Life of the patient with epidermolysis bullosa
Abstract:Epidermolysis Bullosa is a genetic skin disease, which affects only a handful of people around the world. The term skin thin as a butterfly's wings is used because main symptoms of the disease are skin blisters and mucous membranes. The condition includes other systemic symptoms, based on the subtypes. The purpose of the research was to determine the daily life of the patient with epidermolysis bullosa, to highlight complications and to investigate how the patient faces problems associated with his illness. A qualitative research and descriptively methodology was used in the research. Structured interview with the patient with epidermolysis bullosa was the source of the information. Pain management is one of the main problems our patient faces. She also has complications with food intake, because of the gastrointestinal problems. Special care must be taken to avoid dangers of the outside world, such as trauma, temperature change, and infection. We also determined that special attention must be given to mental health because the patient used to experience low self-esteem, inappropriate social interactions and anxiety in the past. From the research and related literature we concluded, that patients with epidermolysis bullosa know how to handle the complications of the condition. Research showed that the disadvantages are mainly in aiding support to the patients family, care for the patient’s mental health and health of all the other family members. The role of health professionals is primarily teaching and support for the patient and his family.
Keywords:skin blisters, pain management, wound care, psychosocial impact, financial impact.


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