Spremembe v kakovosti življenja pri bolnikih z multiplo sklerozo in njihovih svojcih po sodelovanju v podporni skupini

Žohar, Renata (author), Erzar, Tomaž (mentor)

Multipla skleroza je neozdravljiva avtoimunska bolezen centralnega živčnega sistema, za katero je značilno, da se kaže v številnih, zelo raznolikih nevroloških simptomih, od katerih je odvisen celoten potek bolezni. Osebe, ki so obolele za MS, se soočajo s širokim spektrom težav na številnih področjih posameznikovega življenja, kar pa močno vpliva na kakovost življenja. Glavni cilj celovite oskrbe bolnikov je ohranjanje kakovosti življenja. Ena izmed oblik podpore pri bolnikih z MS je sodelovanje v podpornih skupinah. V magistrskem delu smo obravnavali povezavo med sodelovanjem v podpornih skupinah za bolnike in njihove svojce in spremembah v kakovosti njihovega življenja. V teoretičnem delu smo opredelili multiplo sklerozo in dejavnike, ki jih povezujemo z nastankom bolezni. Opisali smo tudi oblike poteka bolezni, simptome in možne oblike zdravljenja. Del teoretičnega uvoda smo namenili tudi kakovosti življenja bolnikov z MS. Poglavje o skupinski obravnavi vključuje podpoglavja o zgodovini skupinskega pristopa, oblikah in terapevtskih učinkih le-te ter o skupinski obravnavi MS. V empiričnem delu je predstavljena raziskava, v kateri je bilo raziskano področje sodelovanja v podpornih skupinah za bolnike z MS in njihove svojce v povezavi s spremembo kakovosti njihovega življenja. V namen raziskave je bila uporabljena kvantitativna in kvalitativna metoda. Uporabili smo anketni vprašalnik, ki je vključeval demografska vprašanja in je sestavljen iz treh že uveljavljenih vprašalnikov, in sicer iz vprašalnika o telesnih občutkih, Profila življenjskega odnosa in Lestvice zadovoljstva z življenjem. V raziskavi je sodelovalo 20 udeležencev, med katerimi je bila polovica udeležencev bolnikov z MS in polovica svojcev obolelih oseb za to boleznijo. Vsi udeleženci so bili eno leto vključeni v podporno skupino. Raziskava je po enem letu sodelovanja v podporni skupini za bolnike in svojce obolelih pokazala napredek pri SWLS vprašalniku, ki kaže več zadovoljstva z življenjem in manj strahu pri BSQ vprašalniku. LAP-R vprašalnik nam je pokazal več profila življenjskega odnosa, čeprav je bil samo en rezultat statistično pomemben. Na podlagi rezultatov lahko trdimo, da sodelovanje v skupini pozitivno vpliva na kakovost življenja oseb z multiplo sklerozo in njihovih svojcev.

• Language: Slovenian
• Keywords: multipla skleroza, skupinska obravnava, podporna skupina, kakovost življenja
• Work type: Master's thesis/paper
• Organization: TEOF - Theological Faculty
• Year: 2024
• PID: 20.500.12556/RUL-158625
• Publication date in RUL: 18.06.2024

Secondary language

• Language: English
• Title: Changes in quality of life in patients with multiple sclerosis and their relatives after participating in the support group.

Abstract

Multiple sclerosis is an incurable autoimmune disease of the central nervous system, which is characterized by many, very diverse neurological symptoms, on which the entire course of the disease depends. People with MS face a wide range of problems in many areas of an individual's life, which greatly affects the quality of life. The main goal of comprehensive patient care is to maintain the quality of life. One form of support for patients with MS is participation in support groups. In the master's thesis, we discussed the connection between participation in support groups for patients and their relatives and changes in their quality of life. In the theoretical part, we defined multiple sclerosis and the factors associated with the onset of the disease. We also described the course of the disease, symptoms and possible forms of treatment. Part of the theoretical introduction was also devoted to the quality of life of patients with MS. The chapter on group treatment includes subchapters on the history of the group approach, its forms and therapeutic effects, and on group treatment of MS. The empirical part presents a research in which the field of participation in support groups for MS patients and their relatives was investigated in connection with the change in their quality of life. Quantitative and qualitative methods were used for the purpose of the research. We used a survey questionnaire that included demographic questions and consisted of three established questionnaires, namely: a questionnaire on body sensations, a Life Attitude Profile and a Life Satisfaction Scale. 20 participants took part in the research, among which half of the participants were MS patients and half were relatives of patients with this disease. All participants were included in the support group for one year. After one year of participation in a support group for patients and their relatives, the research showed an improvement in the SWLS questionnaire, which shows more satisfaction with life and less fear in the BSQ questionnaire. The LAP-R questionnaire showed us several life attitude profiles, although only one result was statistically significant. Based on the results, we can claim that participation in the group has a positive effect on the quality of life of people with multiple sclerosis and their relatives.

• Keywords: multiple sclerosis, group treatment, support group, quality of life