A patient with systemic sclerosis - a case study

Uvod: Sistemska skleroza je kronična avtoimuna bolezen vezivnega tkiva in spada med redka revmatična obolenja, ki v večjem procentu prizadene ženske. Njene posledice lahko uporabniku poslabšajo kakovost življenja in mu skrajšajo življenjsko dobo. Prav tako mu otežijo izvajanje raznih vsakodnevnih aktivnosti in okupacij. Ob soočanju s to boleznijo je ključnega pomena pozitivna podpora in multidisciplinarna obravnava, h kateri spada tudi delovna terapija. Namen: Namen diplomskega dela je pridobiti uporabničino doživljanje in soočanje z boleznijo in z boleznijo povezanimi težavami ter njeno videnje pomena delovne terapije v procesu rehabilitacije. Poleg tega nas zanima, kakšne so njene prilagoditve in pripomočki, ki jih uporablja za lažje delovanje in izvajanje okupacij. Pridobiti želimo tudi nekaj informacij o poteku obravnave uporabnice s strani delovnega terapevta in kakšen je bil njegov pristop. Metode dela: Raziskava je bila izdelana v obliki študije primera. Podatke s strani uporabnice smo zbrali s pomočjo polstrukturiranega intervjuja, ki je bil narejen na osnovi CMOP konceptualnega modela. Z delovnim terapevtom pa je bil izveden strukturiran intervju. Rezultati: Uporabnica se je po diagnozi soočila z negativnimi čustvi in zanikanjem ter pomankanjem informacij, kar je slabo vplivalo na njeno stanje. Ko pa je le-to sprejela, se je pričela učiti, kako z boleznijo živeti. Pri tem sta imela velik vpliv pozitivna podpora družine ter sprememba okolja. Prav tako tudi delovni terapevt s celostnim pristopom in nasveti, ki so bili usmerjeni v uporabnici pomembne aktivnosti ter okupacije. Zaradi pomanjkanja informacij o sami bolezni v slovenščini, se je uporabnica poglobila in raziskala literaturo ter razne članke v tujem jeziku. Medtem je našla tudi kakšen pripomoček in prilagoditev, ki ji sedaj lajša življenje in izvedbo različnih aktivnosti. S fizičnimi aktivnostmi ohranja svojo zmogljivost in moč. Po šestih letih z boleznijo živi in dela brez večjih težav, z izjemo nekaterih prilagoditev in uporabo pripomočkov, ki ji le-to olajšajo in omogočajo. Razprava in zaključek: Ugotovili smo, s čim se oseba s sistemsko sklerozo po navadi sooča pri postavitvi takšne diagnoze. Ključnega pomena je povezava med osebo, okupacijo in okoljem, saj vsak posamezni element vpliva na drugega. Če oseba prejeme pozitivno podporo iz okolja ter nasvete in prilagoditve za lažje opravljanje okupacij, to pripomore k temu, da je oseba bolj zadovoljna in uspešna. Kljub pomankanju splošnih informacij vezanih na bolezen, kar predstavlja oviro, je bila uporabnica uspešna pri lajšanju težav. Delovni terapevt lahko ima velik vpliv pri osebi s sistemsko sklerozo in njegovim soočanjem s to boleznijo.Introduction: Systemic sclerosis is a chronic autoimmune connective tissue disease which is a rare rheumatic disease that mostly affects women. The disease can affect a person’s ability to perform everyday activities and occupations. When facing such a disease, it is very important to have a support system and a multidisciplinary treatment, where an occupational therapy is also a part of. Purpose: The purpose of the diploma work is to get the participants story about her experience and confrontment with the disease, the problems it caused and how the occupational therapy helped with her recovery. We are also interested in how she adapted and what assistive technology does she use for more efficient performance in her occupations. With interviewing the occupational therapist, we wanted to get some information about his approach and what interventions were included. Methods: The research was conducted in the form of a case study. We gathered information from the participant with the use of a half-structured interview which was based on the CMOP model. We also did a structured interview with the occupational therapist. Results: The participant had a hard time with her denial after the diagnosis. All of this and the lack of information had a negative effect on her wellbeing. When she accepted her diagnosis, only then she started to learn how to live with it. Having a support system and by changing her living environment also had a big impact with accepting the diagnosis. The occupational therapist gave the participant advice with an overall approach that was aimed at her occupations. All of this helped her with managing her disease and its effects. Because there is a lack of information in Slovene language, the participant decided to research literature and different articles in foreign languages. When doing research, she also found some modifications and assistive technology, that helps her with her everyday activities and occupations. With different physical activities she maintains her strength and performance. After six years of diagnosis onset, she lives and works with hardly any difficulties. She uses some modifications and assistive technology which helps her to function normally and to engage in her occupations. Discussion and conclusion: We gathered information about personal experience of a person with systemic sclerosis. The most important is the connection between the person, occupation and environment, because every individual component effects each other. The person can function better with a supporting system, advice and suggestions about different modifications. All of this helps the person feel satisfied and be more successful. But even from the lack of information, which is a big obstacle, the participant was successful with easing the consequences from the disease. The occupational therapist can also have a big impact on a patient’s function and wellbeing, when confronting the disease