Uloga edukacijskog rehabilitatora u poboljšanju kvalitete života osoba oboljelih od bulozne epidermolize

master's thesis

• Author: Suzana Pavlinić
• Mentor: Renata Pinjatela (mentor)
• Committee member: Renata Pinjatela (predsjednik povjerenstva)
• Committee member: Renata Martinec (član povjerenstva)
• Committee member: Damir Miholić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2018-09-18, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Bulozna epidermoliza je rijetka nasljedna skupina bolesti kože koju obilježava preosjetljivost kože i stvaranje mjehura na predjelima kože izloženima trljanju. Osim fizičke manifestacije, bolest karakteriziraju i sekundarne komplikacije na brojnim organima i organskim sustavima. Kao posljedica svakodnevnog suočavanja s raznim izazovima i zahtjevima koji prolaze iz složene dijagnoze ove bolesti, ona ima značajan utjecaj na psihosocijalni i emocionalni status oboljelog. Uz potrebu za socijalnom podrškom te podrškom članova obitelji, to zahtjeva i uključenost multidisciplinarnog tima u zbrinjavanje oboljelih, koji bi trebao osigurati oboljelima odgovarajuću psihosocijalnu podršku. S obzirom na složenu kliničku sliku, biopsihosocijalni model predstavlja najbolji oblik terapijske intervencije u liječenju i rehabilitaciji ove neizlječive bolesti. Cilj ovog rada bio je prikazati utjecaj rada edukacijskog rehabilitatora na kvalitetu života osoba s buloznom epidermolizom, odnosno predstaviti na koji način, uporabom kojih sredstava i tehnika, edukacijsko-rehabilitacijski pristup kao jedan od holističkih pristupa u okviru biopsihosocijalnog modela, može utjecati na osobni razvoj i psihološko blagostanje oboljelog, te posljedično poboljšati njegovo svakodnevno funkcioniranje u okolini i kvalitetu života. Iako su podaci iz stručne literature i rezultata znanstvenih istraživanja, koji govore o utjecaju primjene kreativnih i ekspresivnih medija poput glazbe, plesa i pokreta ili psihodrame na psihosocijalne poteškoće, prilagodbu i suočavanje s bolešću oboljelih od bulozne epidermolize malobrojni, oni upućuju na znanstvenu utemeljenost učinkovitosti primjene kreativnih i art/ekspresivnih terapija u tretmanu osoba s buloznom epidermolizom.

Abstract (english)

Epidermolysis bullosa is a group of rare hereditary skin diseases characterized by skin hypersensitivity and blister formation in the areas of skin exposed to rubbing. In addition to physical manifestation, the disease is characterized by secondary complications on numerous organs and organ systems. Due to its complex diagnosis, which results in the everyday confrontation with various challenges and demands, this disease has a significant influence on the psychosocial and emotional status of the affected person. In addition to the need for social support and the support of family members, the treatment requires the involvement of a multidisciplinary care team, which should provide appropriate psychosocial support to the patients. Given the complex clinical picture, the biopsychosocial model represents the best form of therapeutic intervention in treatment and rehabilitation of this incurable disease. The aim of this paper was to show the impact of the work of the educational rehabilitator on the quality of life of people affected by epidermolysis bullosa, and to demonstrate in which way the educational rehabilitation approach, as one of the holistic approaches within the biopsychosocial model can affect personal development and well-being of the affected person, thus consequently improving his daily functioning in the environment as well as his quality of life. Scientific literature data and research results, which indicate the influence of using creative and expressive media such as music, dance and movement or psychodrama on psychosocial difficulties, adaptation and confrontation with epidermolysis bullosa, are scarce but point to scientific foundation and efficiency of creative and art/expressive therapies in the treatment of people affected by epidermolysis bullosa.

• Keywords: bulozna epidermoliza; kvaliteta života; multidisciplinarni tim; edukacijskorehabilitacijski pristup; kreativne i art/ekspresivne terapije
• Keywords (english): epidermolysis bullosa; quality of life; multidisciplinary team; educational rehabilitation approach; creative and art/expressive therapies
• Language: croatian
• URN:NBN: urn:nbn:hr:158:482496
• Study programme: Title: Educational Rehabilitation; Study programme type: university; Study level: graduate; Academic / professional title: magistar/magistra edukacijske rehabilitacije (magistar/magistra edukacijske rehabilitacije)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access
• Created on: 2018-10-30 10:47:09