Title Touretteov sindrom : kvaliteta života oboljelih i stavovi okoline Title (english) Tourette syndrome : patients quality of life and opinions of community Author Dunja Mrinjek Mentor Renata Pinjatela (mentor)Mentor Marina Roje Bedeković (komentor)Committee member Renata Pinjatela (predsjednik povjerenstva)Committee member Renata Martinec (član povjerenstva)Committee member Damir Miholić (član povjerenstva)Granter University of Zagreb Defense date and country 2023-09-25, Croatia Scientific / art field, SOCIAL SCIENCES Abstract Touretteov sindrom [TS] neurorazvojni je poremećaj okarakteriziran motoričkim te bar jednim vokalnim (fonetskim) tikom (Američka psihijatrijska asocijacija [APA], 2013). TS je heterogen i varijabilan poremećaj u kojem ne postoje dva pacijenta koji doživljavaju iste simptome (Billnitzer i Jankovic, 2020). S obzirom na veliku raznolikost simptoma TS-a, njihov utjecaj na život osobe veoma je opsežan. Kod osoba s TS-om pogođene su brojne domene kvalitete života (Robertson i sur., 2017).
Cilj ovog rada bio je opisati motorička, psihološka, kognitivna i socijalna obilježja osoba s TS. Također, nastojalo se dobiti uvid u jedinstveno iskustvo života s Touretteovim sindromom, uz naglasak na kvalitetu života ovih osoba, pristupu stručnoj podršci te probleme s kojima se ove osobe svakodnevno susreću. Također, ispitani su stavovi okoline u RH o ovom sindromu. Podaci su prikupljeni intervjuima s osobom s dijagnosticiranim TS-om i stručnjakom mr. sc. Nenadom Jakušićem te provedbom anketnog upitnika o stavovima okoline prema osobama s TS-om. Prikupljeni podaci obrađeni su kvalitativnom i kvantitativnom analizom. Istraživanjem je potvrđeno da se obilježja TS-a podudaraju s navodima iz strane literature te da osobe s TS-om ne odstupaju u kognitivnim sposobnostima naspram opće populacije. Podaci o finoj i gruboj motorici razlikuju se te se na taj način podudaraju s kontradiktornim rezultatima svjetskih istraživanja. Istraživanjem je potvrđen znatan utjecaj TS-a na kvalitetu života osobe, a istaknuto je da socioekonomski status te komorbiditeti dodatno pogoršavaju kvalitetu života. U istraživanju je istaknuta i nedostatnost stručne sustavne podrške u RH za osobe s TS-om. Također, rezultati ovog istraživanja ukazuju na to da se osobe s TS-om suočavaju sa stigmatizacijom u svakodnevnom životu. Provedbom anketnog upitnika dokazan je porast pozitivnih stavova i znanja okoline prema osobama s TS-om.
Iako je pozitivna činjenica da šira javnost postaje sve tolerantnija i osvještenija o TS-u, put prema potpunom prihvaćanju tek je započeo. Osobe s TS-om zaslužuju veću reprezentaciju u službenim sustavima podrške i općoj javnosti u cilju boljeg razumijevanja samog sindroma i prihvaćanja od strane okoline u RH. Ističe se i potreba edukacije stručnjaka za rad s osobama s TS-om. Iako se osobe s TS-om suočavaju s mnogim ograničenjima koje donosi snižena kvaliteta života, uz odgovarajuću podršku i modele suočavanja, moguće je ostvariti puni potencijal i sudjelovanje u zajednici.
Abstract (english) Tourette's Syndrome [TS] is a neurodevelopmental disorder characterized by motor and at least one vocal (phonetic) tic (American Psychiatric Association [APA], 2013). TS is a heterogeneous and variable disorder in which no two patients experience the same symptoms (Billnitzer & Jankovic, 2020). Given the wide variety of TS symptoms, their impact on a person's life is extensive. Individuals with TS are affected in numerous domains of quality of life (Robertson et al., 2017).
The aim of this paper was to describe the motor, psychological, cognitive, and social characteristics of individuals with TS. Additionally, it sought to gain insight into the unique experience of living with Tourette's Syndrome, with a focus on the quality of life of these individuals, access to professional support, and the challenges they face on a daily basis. Attitudes of the environment in Croatia toward this syndrome were also examined. Data was collected through interviews with a person diagnosed with TS and expert Mr. Sc. Nenad Jakušić, as well as through the administration of a questionnaire on the attitudes of the environment toward individuals with TS. The collected data was analyzed qualitatively and quantitatively. The research confirmed that the characteristics of TS align with findings from foreign literature and that individuals with TS do not differ significantly in cognitive abilities compared to the general population. Data on fine and gross motor skills varied, thus aligning with contradictory results from global research. The study confirmed a significant impact of TS on a person's quality of life, emphasizing that socioeconomic status and comorbidities further worsen the quality of life. The research also highlighted the inadequacy of systematic professional support in Croatia for individuals with TS. Furthermore, the results of this study indicate that individuals with TS face stigmatization in everyday life. The questionnaire showed an increase in positive attitudes and knowledge of the environment toward individuals with TS.
While it is a positive development that the general public is becoming increasingly tolerant and aware of TS, the path to full acceptance has only just begun. Individuals with TS deserve greater representation in official support systems and in the general public in order to improve understanding of the syndrome and acceptance by society in Croatia. There is also a need to educate professionals to work with individuals with TS. Despite the many limitations brought about by reduced quality of life, with appropriate support and coping models, it is possible to realize their full potential and participate in the community.
Keywords
Touretteov sindrom
kvaliteta života
stavovi okoline
obilježja
Keywords (english)
Tourette's Syndrome
quality of life
attitudes of the environment
characteristics
Language croatian URN:NBN urn:nbn:hr:158:800734 Study programme Title: University graduate study of Educational Rehabilitation Type of resource Text File origin Born digital Access conditions Open access Terms of use Created on 2023-10-17 12:46:03
