Kvaliteta života osobe sa spinocerebelarnom ataksijom

master's thesis

• Title (english): Quality of life of a person with spinocerebellar ataxia
• Author: Ivona Uršan
• 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: 2022-09-19, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Kvaliteta života nekada se promatrala samo iz perspektive pacijenata dok su u novije vrijeme istraživanja proširena na članove njihovih obitelji. Shodno tome, provedeno je kvalitativno istraživanje Kvaliteta života osobe sa spinocerebelarnom ataksijom pri čemu je posebni naglasak stavljen na članove njezine obitelji te iskustvo podrške iz tri različita sustava – odgoja i obrazovanja, socijalne skrbi i zdravstva.
Prilikom provedbe istraživanja korišten je polustruktuirani intervju dok su rezultati istraživanja obrađeni tematskom analizom. U istraživanju je sudjelovalo dvoje ispitanika iz tročlane obitelji manje gradske sredine.
Intervju je proveden s osobom sa spinocerebelarnom ataksijom i njezinim skrbnikom odnosno mladićevom majkom. Nalazi dobiveni istraživanjem ukazali su na najizraženije propuste iz tri sustava – odgoja i obrazovanja, socijalne skrbi i zdravstva. Navedeni propusti predstavljaju nužne preporuke za promjene i poboljšanje sustava.

Abstract (english)

The quality of life used to be observed only from the patients' perspective, while more recently research has been extended to their family members. Consequently, a qualitative study was conducted Quality of life of a person with spinocerebellar ataxia with a special emphasis on the experience of support from three different systems - upbringing and education, social care and health care.
During the implementation of the research, a semi-structured interview was used, while the results of the research were processed by thematic analysis. Two respondents from a three-member family from a small town took part in the research.
An interview was conducted with a person with spinocerebellar ataxia and their caregiver, their mother. The findings of the research pointed to the most pronounced failures in three systems - upbringing and education, social welfare and health care. The mentioned failures represent the main recommendations for changes and improvement of the system.

• Keywords: spinocerebelarna ataksija; kvaliteta života; sustav odgoja i obrazovanja; sustav socijalne skrbi; zdravstveni sustav
• Keywords (english): quality of life; spinocerebellar ataxia; education system; social care; health care system
• Language: croatian
• URN:NBN: urn:nbn:hr:158:462478
• Study programme: Title: Graduate study of 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: 2022-11-02 13:30:00