Sodelovanje in vključevanje oseb z multiplo sklerozo v okupacije : diplomsko delo

Šterbal, Ajda (avtor), Sicherl, Zorana (mentor), Oven, Alenka (recenzent)

Uvod: Multipla skleroza je kronična avtoimuna vnetna bolezen, ki prizadene osrednje živčevje. Največkrat se pojavi pri mladih ljudeh med 20. in 40. letom starosti. Za bolezen je značilno propadanje ovojnice živčnih vlaken zaradi poškodb in izgube mielina. Slednje povzroči upočasnitev ali celo prekinitev prevajanja živčnih dražljajev (impulzov) po živčnih vlaknih, kar izzove določene simptome. Najpogostejši simptomi so utrudljivost, težave z ravnotežjem, mravljinčenje, dvojni vid in bolečine v rokah ter nogah. Omenjene težave osebam otežujejo in preprečujejo izvajanje vsakodnevnih aktivnosti in jim s tem zmanjšujejo kakovost življenja. Namen: Ugotavljali smo, kako se je po ugotovljeni diagnozi spremenilo življenje oseb z multiplo sklerozo, na katerih področjih delovanja imajo največ težav, kako se te težave kažejo in na kakšen način se vključujejo v vsakodnevne aktivnosti. Zanimala nas je tudi pomoč in podpora svojcev in prijateljev pri spopadanju z boleznijo ter sprejemanje bolezni z vidika sodelavcev. Metode dela: Izvedena je bila kvalitativna raziskava, za katero smo podatke pridobili preko polstrukturiranih intervjujev. V raziskavo so bile vključene 4 osebe z multiplo sklerozo. Intervjuji so bili zvočno posneti, transkripti pa analizirani s kvalitativno analizo. Rezultati: Diagnoza multiple skleroze osebam zelo spremeni življenje. Zaradi simptomov se vse težje vključujejo v vsakodnevne aktivnosti, posledično pa se jim zmanjšuje tudi kakovost življenja. Bolezen pusti posledice na področju skrbi zase, produktivnosti in prostega časa, velik vpliv pa ima tudi na zmanjšanje socialnega kroga in družbe. Osebe z multiplo sklerozo se nekaterim okupacijam zaradi težje izvedbe velikokrat odpovejo ali pa jih izvedejo na drugačen, prilagojen način. Pri tem si pomagajo z različnimi pripomočki, z vključevanjem načrtovanih premorov ali pa jim k izvedbi pripomorejo svojci. Razprava in zaključek: Osebe z multiplo sklerozo se zaradi bolezni vsakodnevno srečujejo s številnimi izzivi, ki jih lažje premagujejo s pomočjo svoje družine, svojcev in prijateljev. Zaradi težav pri izvedbi so primorane uporabiti različne prilagoditve, nekatere pa se določenim aktivnostim celo odpovejo. Bolezen vpliva tudi na duševno zdravje, zaradi česar se velikokrat počutijo nekoristne in nesigurne same vase, vendar pa jo kljub vsemu sprejmejo in se z njo poskušajo naučiti živeti. Zaradi slabega poznavanja bolezni in posledičnih težav, ki jih prinese multipla skleroza v vsakdanje življenje posameznika, bi bilo potrebno na to temo narediti več obširnejših raziskav usmerjenih v udejstvovanje posameznikov z multiplo sklerozo v vsakodnevne aktivnosti. Tako bi dobili boljši vpogled v njihovo doživljanje, jih bolje razumeli in lažje tudi oblikovali delovnoterapevtsko obravnavo.

• Jezik: Slovenski jezik
• Ključne besede: diplomska dela, delovna terapija, avtoimunske bolezni, doživljanje bolezni, vpliv na vsakodnevne aktivnosti
• Vrsta gradiva: Diplomsko delo/naloga
• Tipologija: 2.11 - Diplomsko delo
• Organizacija: ZF - Zdravstvena fakulteta
• Kraj izida: Ljubljana
• Založnik: [A. Šterbal]
• Leto izida: 2021
• Št. strani: 30 str., [2] str. pril.
• PID: 20.500.12556/RUL-127348
• UDK: 615.851
• COBISS.SI-ID: 65763843
• Datum objave v RUL: 03.06.2021

ŠTERBAL, Ajda, 2021, Sodelovanje in vključevanje oseb z multiplo sklerozo v okupacije : diplomsko delo [na spletu]. Diplomsko delo. Ljubljana : A. Šterbal. [Dostopano 19 maj 2025]. Pridobljeno s: https://repozitorij.uni-lj.si/IzpisGradiva.php?lang=slv&id=127348

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: Engagement and participation of people with multiple sclerosis : diploma work

Izvleček

Introduction: Multiple sclerosis is a chronic autoimmune inflammatory disease that affects the central nervous system. It most often occurs at young age - between 20 and 40 years of age. During the process, the nerve fiber sheaths fail mainly due to damage and loss of myelin. Only this causes a slowing down or even interruption of the conduction of nerve stimuli (impulses) along the nerve fibers, which in turn causes certain symptoms. The most common symptoms are fatigue, balance problems, tingling, double vision and pain in the arms and legs. This prevents people with multiple sclerosis engage and participate in various occupations and reduce their quality of life. Purpose: The aim of the research was to investigate how the diagnosis changed the life of people with multiple sclerosis, what areas of activities were identified as being difficult, how these problems exposed and in what way they engage in daily activities. Furthermore we wanted to determinate the level of help received from the enviroment and the way people with multiple sclerosis were accepting and dealing with the disease. Methods: A qualitative research was conducted, for which data were obtained through semi-structured interviews. Four people with multiple sclerosis were included in the study. Interviews were audio-recorded and transcripts were analyzed by qualitative content analysis. Results: The diagnosis of multiple sclerosis is life-changing for individuals. Due to the symptoms that the diagnosis brings, they find it increasingly difficult to engage in daily activities, and as a result, their quality of life is reduced. The disease has consequences in all aspects: leisure, self-care and productivity, and it also has a great impact on the social network. People with multiple sclerosis often give up some occupations due to difficulties in performance or preform them in an adapted way. They use different aids, implement rest or use the help of others. Discussion and conclusion: People with multiple sclerosis face many challenges on a daily basis due to the disease. The difficulties are easier to overcome with the help of their family, relatives and friends. People are forced to make various adjustments, and some even give up certain activities. The disease also affects people in the mental health, which often makes them feel useless and insecure, but they still accept the disease and try to learn to live with it. Due to lack of knowledge about the personal experience of the disease, more extensive research should be done on this topic. This would give a better understanding into their experience, better understand them and make it easier to design occupational therapy treatments.

• Ključne besede: diploma theses, occupational therapy, autoimmune diseases, disease experience, impact on daily activities