Socijalne usluge za osobe s rijetkim bolestima

undergraduate thesis

• Title (english): SOCIAL SERVICES FOR PEOPLE WITH RARE DISEASES
• Author: Mia Turan
• Mentor: Marko Buljevac (mentor)
• Committee member: Marko Buljevac (predsjednik povjerenstva)
• Committee member: Zdravka Leutar (član povjerenstva)
• Committee member: Marina Milić Babić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Law; (In social work); (Social Work with Disabled Persons); Zagreb
• Defense date and country: 2016-09-20, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Social Activities; Theory of Social Work

Abstract

Svrha ovog preglednog rada je da se na temelju dosadašnjih spoznaja omogući uvid u to što su rijetke bolesti, kolika je njihova prevalencija, te da se ukaže na postojeći problem nedovoljnog poznavanja i upućenosti javnosti te samih socijalnih usluga za oboljele. Socijalne usluge obuhvaćaju aktivnosti, mjere i programe namijenjene sprječavanju, prepoznavanju i rješavanju problema i poteškoća pojedinaca i obitelji te poboljšanju kvalitete njihovog života u zajednici. Rijetke bolesti zahvaćaju velik broj osoba u populaciji, a smatra se da u Hrvatskoj boluje 250 000 ljudi. Zbog oboljenja ne pate samo oboljeli, nego i članovi njihove obitelji. Kvaliteta života oboljelih može se unaprijediti korištenjem lijekova siročadi čija je namjena postavljanje dijagnoze, prevencija i terapija rijetkih bolesti. Sa socijalne strane, javnost, a čak i medicinski stručnjaci, imaju vrlo malo saznanja o toj vrsti bolesti, zbog čega je medicinska i socijalna zaštita slabo organizirana, a lijekovi skupi ili slabo istraživani. Posljedica toga je da u Hrvatskoj ne postoje registri osoba s rijetkim bolestima te da tek manji broj oboljelih dobija odgovarajuću genetičku informaciju u okviru genetičkog savjetovališta.

Abstract (english)

The purpose of this review is be based on recent studies to provide insight into what rare diseases are, what is their prevalence, and to point out the existing problem of insufficient knowledge and knowledge of the citizens as well as social services for people who suffer from them. Social sevices includes activities, measures and programs for the prevention, identification and resolution of problems and difficulties of individuals and families and to improve their quality of life in the community. Rare diseases affect a large number of people in the population, and it is believed that in Croatia 250,000 people suffer from those rare diseases. Because the disease is not only suffering for the patients, but also for their family members. The quality of life in patients can be improved by using orphan drugs intended to diagnose, prevention and treatment of rare diseases. Within the social, public, and even medical circles, there is very little knowledge of this type of diseases, which is why the medical and social protection is poorly organized and medications are expensive, and poorly investigated. The consequence is that in Croatia there are no registries of people with rare diseases and that only a small number of patients receive appropriate genetic information as part of genetic counseling.

• Keywords: Ključne riječi: rijetke bolesti; prevalencija; socijalne usluge; lijekovi siročadi; javnost
• Keywords (english): Keywords: rare diseases; prevalence; social services; orphan drugs; public
• Language: croatian
• URN:NBN: urn:nbn:hr:199:771094
• Study programme: Title: Social Work; Study programme type: university; Study level: undergraduate; Academic / professional title: sveučilišni/a prvostupnik/prvostupnica (baccalaureus/baccalaurea) socijalnog rada (sveučilišni/a prvostupnik/prvostupnica (baccalaureus/baccalaurea) socijalnog rada)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Closed access
• Created on: 2016-09-20 09:07:36