Braća i sestre osoba s rijetkim bolestima

master's thesis

• Title (english): Siblings of people with rare diseases
• Author: Ida Mirković Knaus
• Mentor: Marko Buljevac (mentor)
• Committee member: Marko Buljevac (predsjednik povjerenstva)
• Committee member: Kristina Urbanc (član povjerenstva)
• Committee member: Marina Milić Babić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Law; (Social Work Studies); Zagreb
• Defense date and country: 2021-09-27, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Social Activities

Abstract

Rijetke su bolesti najčešće kompleksne, kronične i progresivne prirode, a nedostatak informacija, adekvatne skrbi, lijekova i terapija predstavljaju dodatan otežavajući faktor. Obitelji osoba s rijetkim bolestima suočene su s brojnim preprekama i izazovima koji utječu na njihovo svakodnevno funkcioniranje. Kroz ovaj rad prikazane su neke specifičnosti iskustava braće i sestara osoba s rijetkim bolestima te su navedeni različiti pozitivni i negativni aspekti odrastanja uz brata ili sestru s rijetkom bolesti. Koristeći koncept psihološke otpornosti, analizirani su različiti čimbenici na individualnoj, obiteljskoj i široj socijalnoj razini koji su povezani s povoljnim, odnosno nepovoljnim razvojnim ishodima braće i sestara. Na temelju toga, predstavljeni su neki mogući načini jačanja čimbenika zaštite te unapređenja psihološke otpornosti braće i sestara osoba s rijetkim bolestima u svrhu osiguranja njihove što učinkovitije prilagodbe te pozitivnih razvojnih ishoda, s osvrtom na ulogu socijalnih radnika u istome.

Abstract (english)

Rare diseases are most often complex, chronic and progressive in nature, and the lack of information, adequate care, medication and therapy is an additional aggravating factor. Families of people with rare diseases face a number of obstacles and challenges that affect their daily functioning. Through this paper, some specifics of the experiences of siblings of people with rare diseases are presented, and various positive and negative aspects of growing up with a brother or sister with a rare disease are listed. Using the concept of psychological resilience, various factors at the individual, family and wider social level that are related to favorable or unfavorable developmental outcomes of siblings were analyzed. Based on this, some possible ways of strengthening protection factors and improving the psychological resilience of siblings of people with rare diseases are presented in order to ensure their most effective adaptation and positive developmental outcomes, with reference to the role of social workers in it.

• Keywords: rijetke bolesti; braća i sestre; psihološka otpornost
• Keywords (english): rare diseases; siblings; psychological resilience
• Language: croatian
• URN:NBN: urn:nbn:hr:199:650919
• Study programme: Title: Social Work; Study programme type: university; Study level: graduate; Academic / professional title: magistar/magistra socijalnog rada (magistar/magistra socijalnog rada)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Closed access
• Created on: 2021-11-25 12:27:27