Doprinos autizma na obitelj i iskustvo obiteljske podrške iz perspektive sestara i braće

master's thesis

• Title (english): Contribution of autism to family and family support experience from the perspective of sibilings
• Author: Marta Pintarić
• Mentor: Ana Wagner Jakab (mentor)
• Mentor: Natalija Lisak Šegota (sumentor)
• Committee member: Ana Wagner Jakab (predsjednik povjerenstva)
• Committee member: Natalija Lisak Šegota (član povjerenstva)
• Committee member: Jasmina Stošić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2022-09-22, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

S obzirom na specifične teškoće i karakteristike koje proizlaze iz samog poremećaja iz spektra autizma (PSA), obitelj poprima novu ulogu te se suočava s raznim zahtjevima i promjenama. Obitelj ima značajnu ulogu u pružanju podrške članu s PSA, a s obzirom na to da u obiteljima dolazi do preraspodjela uloga, sestre i braća nerijetko zauzimaju one uloge koje olakšavaju opterećenje roditelja. Cilj ovog rada je stoga prikazati doprinos PSA obitelji, kao i različita iskustva obiteljske podrške iz perspektive sestara i braće odraslih osoba s PSA. Ovo kvalitativno istraživanje provodilo se u sklopu projekta „Families in Croatia impacted by Autism Spectrum Disorder“ u suradnji s izv.prof. Alexanderom Jensenom s Brigham Young University, Provo, Utah iz Sjedinjenih Američkih Država. Sudionici istraživanja odabrani su metodom neprobabilističkog prigodnog uzorkovanja, a sudjelovalo je 5 sudionika s područja dva grada, Zagreba i Splita. Uzorak je obuhvatio odrasle sestre i braću osoba s poremećajem iz spektra koji su, također, odrasle dobi. Prikupljeni podaci transkribirani su i analizirani korištenjem tematske analize kako je definiraju Braun i Clarke (2006). Proizašle teme i podteme uključuju pozitivne i negativne doprinose PSA na cjelokupnu obitelj, sestre i braću; iskustvo pružanja podrške sestara i braće; njihovu percepciju o podršci koju pružaju roditelji i šira obitelj; emocionalnu i financijsku podršku; podršku nevladinih organizacija i sustava socijalne skrbi te problem pružanja podrške u perspektivi budućnosti. Dobiveni rezultati prikazuju kompleksnost doprinosa PSA na cijelu obitelj, ali i na svakog člana pojedinačno iz perspektive sestara i braće tipičnog razvoja (TR). Također, daju dublji uvid u iskustva pružanja podrške članu obitelji s PSA koja uključuju zauzimanje značajnih uloga i odgovornosti svih članova obitelji.

Abstract (english)

Considering the specific difficulties and characteristics that result from Autism Spectrum Disorder (ASD) itself, a family takes on a new role and faces various demands and changes. The family plays a significant role in providing support to a member with ASD and, alongside the redistribution of roles in families, siblings often take on roles that ease the burden on parents. Therefore, the aim of this paper is to show the contribution of autism to a family, as well as different experiences of family support from the perspective of the siblings of adults with ASD. This qualitative research was carried out as part of the project "Families in Croatia impacted by Autism Spectrum Disorder" in collaboration with associate professor Alexander Jensen from Brigham Young University, based in Provo, Utah in the United States of America. The research participants were selected using the non-probabilistic convenience sampling method, and 5 participants from the Zagreb and Split area took part in the research. The sample included adult siblings of adults with ASD. The collected data was transcribed and analyzed using thematic analysis as defined by Braun and Clarke (2006). The resulting themes and subthemes include positive and negative contributions of ASD to the whole family, sisters and brothers; the experience of providing support to siblings; their perception of support provided by parents and extended family; emotional and financial support; the support of non-governmental organizations and social care; and the problem of providing support in the future. The obtained results show the complexity of ASD's contribution to the whole family but also to each individual member from the perspective of sisters and brothers. Furthermore, they provide a deeper insight into the experience of providing support to a family member with ASD, which includes assuming pivotal roles and responsibilities of all family members.

• Keywords: poremećaj iz spektra autizma; obiteljska podrška; sestre i braća
• Keywords (english): autism spectrum disorder; family support; siblings
• Language: croatian
• URN:NBN: urn:nbn:hr:158:904839
• 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 08:12:13