Personal assistance given to patients with muscular dystrophy

Mišična distrofija je bolezen, za katero je značilno postopno in nezadržno propadanje mišičnih vlaken, kar sčasoma pomeni delno ali popolno ohromitev določenih mišičnih skupin. Mišična distrofija se lahko pojavi v zgodnjem otroštvu ali tudi kasneje. Bolezen je zaenkrat še neozdravljivazdravijo se lahko le določeni simptomi. Oseba s tem mišičnim obolenjem sčasoma potrebuje pomoč druge osebe. Te osebe so svojci, osebni asistenti ali pa se invalid vključi v institucionalno varstvo. Z raziskavo smo želeli opredeliti mišično distrofijo in ugotoviti, kakšen pomen ima rehabilitacija za obolelega z mišično distrofijo, kakšen pomen ima osebna asistenca za uporabnika ter vlogo in pomen osebnega asistenta. Predstavili smo Društvo distrofikov Slovenije, katerega člani so oboleli za mišično distrofijo in preko svojega socialnega programa nudi osebno asistenco svojim članom. V raziskavi je sodelovalo triintrideset članov Društva distrofikov Slovenije, ki imajo preko društva omogočeno osebno asistenco. Kot raziskovalni instrument smo uporabili anketni vprašalnik, s pomočjo katerega smo pridobili ustrezne podatke na predhodno postavljena raziskovalna vprašanja. Ugotovljeno je bilo, da je 20 (61 %) anketiranih zadovoljnih, 13 (39 %) pa zelo zadovoljnih z osebno asistenco kot celotno dejavnostjo. Uporabniki si želijo osebne asistente, ki so jim blizu po osebnih lastnostih, kot so prijaznost, delavnost, natančnost, komunikativnost in da je starost osebnega asistenta sorazmerna z njihovo starostjo. Osebni asistenti imajo pomembno vlogo za uporabnika na različnih področjihnekateri so popolnoma odvisni od pomoči osebne asistence, drugi potrebujejo pomoč pri vsakdanji osebni higieni, nakupovanju ali spremstvu na sprehodih, prevoz na delos prisotnostjo osebnega asistenta imajo tudi prijateljsko družbo. Ugotovili smo, da osebna asistenca za posameznika pomeni veliko več kot le fizična pomočpomembna je tudi kot psihična pomoč v smislu pogovora, tolažbe ali svetovanja, saj pozitivno vpliva na samopodobo in kakovost življenja. Mislimo, da se bodo v prihodnje potrebe po osebni asistenci povečale zaradi prognoze bolezni in staranja staršev mišično obolelih. To se kaže v želji po daljši prisotnosti osebne asistence in s tem večje samostojnosti, s katero bi bili manj odvisni od svojcev ali partnerjev ter bi jih tako razbremenili. Zaradi želje po čimbolj samostojnem življenju osebna asistenca pomeni velik plus invalidom in naši družbi nasploh.Muscular dystrophy is a disease which is characterized as gradual and progressive deterioration of muscle fibres which eventually leads to partial or complete paralysis of certain muscle groups. Muscular dystrophy can occur in early childhood or even later in life. The disease is still considered incurable, with the exception of some symptoms which can be cured. A person affected with this illness eventually needs help from another person, either relatives, personal assistants or they can be included in institutional care. With this research, we wanted to define muscular dystrophy and find out what the meaning of rehabilitation for the patient suffering from this disease is. We were also interested in the importance of personal assistance to the patient as well as in the role and the significance of a personal assistant. The thesis additionally presents Muscular Dystrophy Association of Slovenia which consists of patients suffering from muscular dystrophy. The association offers personal assistance to its members through their social programme. The research included 33 members of Muscular Dystrophy Association of Slovenia, who are entitled to personal assistance offered by the association. A questionnaire was used to obtain suitable information needed for the research to be executed. It has been established that 20 (61 %) of the interviewed were satisfied, and 13 (39 %) were very satisfied with personal assistance as complete activity. The patients would like to have personal assistants who are compatible to their personal characteristics, such as friendliness, diligence, accuracy, ability to communicate. Besides this, they also desire for a personal assistant of a similar age. Personal assistants have an important role for a patient in different areas. Some patients are completely dependent on the help of their personal assistants, others need help in daily personal care, shopping or an accompanying person on walks or when driving to work. A personal assistant is also a friendly companion to the patient. The research established that personal assistance is more than just physical help to an individual patient. It also presents psychological help in the sense of talk, consolation or counselling as it has a positive influence on self-image and the quality of life of the patient. We believe that in the future the need for personal assistance will increase due to the disease prognosis and the ageing of the parents of the patients suffering from muscular dystrophy. This is evident from the patients’ desire for a longer presence of personal assistance, which consequently means more independence for the patients who are then less dependent on their relatives or partners. Due to the desire of the patients to lead as independent life as possible, personal assistance is a great benefit for the handicapped in our society in general