Utjecaj rijetkih bolesti na obrazovanje i svakodnevni život

master's thesis

• Title (english): The impact of rare diseases on education and everyday life
• Author: Marko Štefan
• 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: 2023-06-29, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Iako rijetke, s dijagnozom rijetkih bolesti živi 6 do 8% europske populacije te postoji više od 6000 poznatih dijagnoza koje se odnose na rijetke bolesti (Hrvatski savez za rijetke bolesti, 2020). Zbog svoje rijetkosti i nedovoljne istraženosti rad s osobama oboljelim od rijetkih bolesti predstavlja izazov u edukacijsko-rehabilitacijskoj znanosti. Rijetke bolesti utječu na ishode obrazovanja i svakodnevni život te možemo sa sigurnošću reći kako narušavaju kvalitetu života. Djeca i mladi oboljeli od rijetkih bolesti se u obrazovnom sustavu uz zdravstvena i medicinska ograničenja susreću i s nedostatkom svijesti i razumijevanja, ograničenom pristupačnosti, društvenom stigmatizacijom te osjećajem izoliranosti i nedostatkom individualizirane podrške. Dijagnoza rijetke bolesti donosi i brojne socijalne, emocionalne i psihološke izazove kako za osobu tako i za njegovu obitelj što posljedično utječe na interpersonalne odnose i na samu kvalitetu života. Cilj ovog rada je uz prikaz izazova s kojima se susreću osobe s dijagnozom rijetke bolesti, prikazati i primjere dobre prakse kako u Hrvatskoj, tako i u svijetu. Jedan od takvih primjera je svakako instrument za promatranje Ågrenska iz Švedske te Baza rijetkih bolesti Hrvatskog saveza za rijetke bolesti. Iako postoji svijest o rijetkih bolestima i veliki broj istraživanja na tu temu potrebna su daljnja istraživanja i umrežavanja svih dionika kako bi se poboljšala socijalna i financijska podrška, pristup dijagnostici i liječenju te samim time poboljšala kvaliteta života osoba s dijagnozom rijetkih bolesti.

Abstract (english)

Although rare, 6 to 8% of the European population lives with a diagnosis of rare diseases, and there are more than 6,000 known diagnoses related to rare diseases (Croatian Association for Rare Diseases, 2020). Due to its rarity and insufficient research, working with people suffering from rare diseases represents a challenge in educational and rehabilitation science. Rare diseases affect educational outcomes and everyday life, and we can say with certainty that they impair the quality of life. In addition to health and medical limitations, children and young people suffering from rare diseases face a lack of awareness and understanding, limited accessibility, social stigmatization and a feeling of isolation and lack of individualized support in the educational system. The diagnosis of a rare disease brings numerous social, emotional and psychological challenges for both the person and his family, which consequently affects interpersonal relationships and the quality of life itself. The aim of this paper is to show the challenges faced by people diagnosed with a rare disease, and to show examples of good practice both in Croatia and in the world. One such example is certainly the instrument for observing Ågrenska from Sweden and the Rare Disease Database of the Croatian Association for Rare Diseases. Although there is awareness of rare diseases and a large amount of research on the subject, further research and networking of all stakeholders are needed in order to improve social and financial support, access to diagnosis and treatment, and thereby improve the quality of life of people diagnosed with rare diseases.

• Keywords: rijetke bolesti; obrazovanje; svakodnevni život; kvaliteta života
• Keywords (english): rare diseases; education; everyday life; quality of life
• Language: croatian
• URN:NBN: urn:nbn:hr:158:163050
• Study programme: Title: University graduate study of Educational Rehabilitation; Study programme type: university; Study level: graduate; Academic / professional title: sveučilišni magistar/magistra edukacijske rehabilitacije (sveučilišni magistar/magistra edukacijske rehabilitacije)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access
• Created on: 2023-07-11 12:49:49