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Title: Vpliv stigme na kakovost življenja oseb z epilepsijo Authors: ID Rožmanc, Mateja (Author) ID Zupančič, Vesna (Mentor) More about this mentor... Files: RAZ_Rozmanc_Mateja_i2024.pdf (1,86 MB) MD5: F2FC5ADE6D19EC9D9825B1280D3051F2   Language: Slovenian Work type: Master's thesis/paper Organization: UNM FZV - University of Novo mesto - Faculty of Health Sciences Abstract: Teoretična izhodišča: Epilepsija je kronična nevrološka bolezen, za katero je značilno pojavljanje epileptičnih napadov. Bolezen lahko prizadene vse staroste skupine, vendar je najpogostejša v otroštvu in kasneje v starosti. Že v preteklosti je veljala za nekaj posebnega, drugačnega, zato so se ljudje oseb z epilepsijo bali in se jih izogibali, jih stigmatizirali. Stigma in diskriminatorno ravnanje sta prisotna še vedno, predvsem zaradi strahu in neznanja ter neinformiranosti ljudi. Epilepsijo danes s podporo slikovne diagnostike zdravimo na različne načine, odvisno od vrste bolezni, pogostosti napadov in vzroka. Kot zdravljenje se je za zelo uspešno izkazalo tudi operativno zdravljenje, saj se pojav epileptičnih napadov lahko toliko zmanjša, da osebe z epilepsijo teh nimajo več, s tem pa se jim izboljša tudi kakovost življenja. Zaživijo lahko skoraj normalno življenje. Kot podpora osebam z epilepsijo pri nas in po svetu delujejo različna društva in združenja, ki skrbijo za redna izobraževanja in izpopolnjevanja strokovnjakov na področju epileptologije ter organizirajo predavanja, srečanja ter strokovno pomoč tudi obolelim, njihovim svojcem in ostalim laikom. Veliko vlogo pri procesu zdravljenja in pri kakovosti življenja ima tudi sodelovanje strokovnega osebja z osebami z epilepsijo. Pomembno je, da se vzpostavi vez zaupanja, saj je zdravljenje le tako lahko uspešno. Namen in cilji: Namen raziskave je bil raziskati, kakšen je vpliv stigme na kakovost življenja oseb z epilepsijo in koliko se je to spremenilo po operativnem zdravljenju epilepsije. Cilji raziskave so bili: • pregledati literaturo, ki vključuje stigmo med osebami z epilepsijo, operativno zdravljenje epilepsije, • ugotoviti prisotnost stigme pri osebah z epilepsijo, • ugotoviti vpliv epilepsije na kakovost življenja oseb z epilepsijo, • ugotoviti, koliko se je stigma zmanjšala oziroma spremenila po operativnem zdravljenju, • ugotoviti, v kolikšni meri se je kakovost življenja po operaciji izboljšala, • ugotoviti, na kakšen način bi lahko zmanjšali vpliv stigme in diskriminatorno ravnanje družbe do oseb z epilepsijo Metode: Raziskava je temeljila na deskriptivni metodi dela. Uporabljen je bil kvalitativni raziskovalni pristop. Primarne podatke smo pridobili s polstrukturiranim intervjujem z osebami z epilepsijo ter z diplomiranimi medicinskimi sestrami / diplomiranimi zdravstveniki. Sekundarne podatke smo pridobili s pregledom domače in tuje literature iz baz podatkov Cobiss, dLib, PubMed, Scholar, Science Direct in Cinahl. Kot instrument za raziskavo smo uporabili predlogo za polstrukturirani intervju. Intervjuje smo izvedli s pacienti in diplomiranimi medicinskimi sestrami / diplomiranimi zdravstveniki. Izvedli smo 13 intervjujev, 10 s pacienti in 3 z diplomiranimi medicinskimi sestrami / diplomiranimi zdravstveniki. Intervjuji so bili izvedeni ločeno za paciente in diplomirane medicinske sestre / diplomirane zdravstvenike. Predlogo je sestavljalo 10 vprašanj, ki so se nanašala na stigmo in kakovost življenja pri osebah z epilepsijo. Raziskava je potekala med septembrom in decembrom 2023. Rezultati: V raziskavi je sodelovalo 13 intervjuvancev (7 žensk in 6 moških). Najmlajša sta bila stara 35 let, najstarejši pa 67 let (v povprečju 46 let). Vsi intervjuvanci imajo različno izobrazbo. Večina intervjuvancev se je počutila stigmatizirane, sploh zaradi značilnih epileptičnih napadov, zato so se izogibali stikom z ljudmi, pa tudi kakovost življenja je bila slabša. Za zelo uspešno se je pri intervjuvanih pacientih izkazalo operativno zdravljenje, saj se je število epileptičnih napadov po operaciji zelo zmanjšalo in s tem izboljšala kakovost življenja. Razprava: S pomočjo raziskave smo ugotovili, da stigma zelo vpliva na kakovost življenja oseb z epilepsijo. Iz rezultatov raziskave izhaja, da intervjuvanci vidijo problem v neznanju in neinformiranosti javnosti glede epilepsije. Priložnost za izboljšanje vidijo v dodatnem izobraževanju in informiranosti javnosti. Predlagajo kakšne informativne oddaje v medijih, predavanja že v osnovni šoli in organiziranje dogodkov na temo epilepsije. Keywords: epilepsija, epileptični napadi, stigma, diskriminacija, predsodki, kakovost življenja Year of publishing: 2024 PID: 20.500.12556/ReVIS-10504  COBISS.SI-ID: 195240195  Publication date in ReVIS: 08.05.2024 Views: 175 Downloads: 9 Metadata:     Cite this work Plain text BibTeX EndNote XML EndNote/Refer RIS ABNT ACM Ref AMA APA Chicago 17th Author-Date Harvard IEEE ISO 690 MLA Vancouver : Copy citation

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Language:	English
Title:	The impact of stigma on the quality of life people with epilepsy
Abstract:	Theoretical starting points: Epilepsy is a chronic neurological disease characterized by epileptic seizures. The disease can affect any age group, but is most common in childhood and later in old age. Already in the past, the disease epilepsy was considered something special, different, and therefore people with epilepsy were afraid and avoided them, stigmatizing them. Stigma and discriminatory behavior is still present, mainly due to fear and ignorance and lack of information among people. Today, epilepsy is treated, with the support of image diagnostics, in different ways, depending on the type of disease, the frequency of attacks and the cause. As a treatment, the operative treatment of epilepsy has also proven to be very successful, as the occurrence of epileptic seizures can be reduced so much that persons with epilepsy no longer have them, and with this, the quality of life itself improves. They can live almost normal lives. Various societies and associations operate in our country and around the world as support for persons with epilepsy, which provide regular training and further training for experts in the field of epileptology, and organize lectures, meetings and, as support, professional help for sufferers, their relatives and other lay people. The cooperation of a professional person with persons with epilepsy also plays a large role in the treatment process and the quality of life. It is important to establish a bond of trust, as this is the only way for the treatment to be successful. Purpose and objectives: The purpose of the research was to investigate the impact of stigma on the quality of life of people with epilepsy and how much it changed after the operative treatment of epilepsy. The objectives of the research were: • review the literature that includes stigma among people with epilepsy, operative treatment of epilepsy, • determine the presence of stigma in people with epilepsy, • determine the impact of epilepsy on the quality of life of people with epilepsy, • to find out how much the stigma has decreased or changed after operative treatment, • to find out to what extent the quality of life has improved after surgery, • find out how the impact of stigma and discriminatory behavior of society towards people with epilepsy could be reduced. Methods: The research was based on the descriptive method of work. A qualitative research approach was used. Primary data were obtained through a semi-structured interview with people with epilepsy and with registered nurses. Secondary data was obtained by reviewing domestic and foreign literature from databases (Cobiss, dlib, Pubmed, Scholar, Science Direct, Cinahl). We used a semi-structured interview template as a research instrument. We conducted interviews with patients and registered nurses. We conducted 13 interviews, 10 with patients and 3 with registered nurses. Interviews were conducted separately for patients and registered nurses. The template consisted of 10 questions related to stigma and quality of life for people with epilepsy. The research took place between september and december 2023. Results: 13 interviewees participated (7 women and 6 men). The youngest were 35 years old and the oldest 67 years old (on average 46 years old). All interviewees have different educational backgrounds. Most of the interviewees felt stigmatized, especially because of typical epileptic attacks, so they avoided contact with people and the quality of life itself was worse. Operative treatment proved to be very successful in the interviewed patients, as the number of epileptic seizures was greatly reduced and thus the quality of life itself improved. Discussion: With the help of research, we found that stigma greatly affects the quality of life of persons with epilepsy. From the research, we see that the interviewees see the problem in the public's ignorance and lack of information about epilepsy. The interviewees see an opportunity for improvement in additional education and informing the public. They suggest some information programs through the media, lectures already in primary schools, organizing events on the topic of epilepsy.
Keywords:	epilepsy, epileptic seizures, stigma, discrimination, prejudice, quality of life

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