Roditeljski stres i partnerski odnosi roditelja odraslih osoba s autizmom

master's thesis

• Title: Roditeljski stres i partnerski odnosi roditelja odraslih osoba s autizmom : kvalitativno istraživanje
• Title (english): Parental stress and intimate relationships of parents of adults with autism : a qualitative study
• Author: Nina Bolonja
• Mentor: Ajana Löw (mentor)
• Mentor: Ana Wagner Jakab (sumentor)
• Committee member: Ajana Löw (predsjednik povjerenstva)
• Committee member: Ana Wagner Jakab (član povjerenstva)
• Committee member: Jasmina Stošić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2022-09-26, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Studije upućuju na to da se roditelji djece s poremećajem iz spektra autizma (PSA) suočavaju
sa značajno višom razinom stresa u usporedbi s ostalim roditeljima djece s teškoćama u razvoju
- zbog heterogenosti dijagnoza, i specifičnih komorbiditeta (Saini i sur., 2015), kao i ozbiljnosti
simptoma i troškova koje nose tretmani i edukacije (Ilias i sur., 2018). Osim stresora direktno
povezanih s djetetom s PSA, roditelji nerijetko izvještavaju o sniženoj kvaliteti braka i
obiteljskog funkcioniranja, premda postoje i nalazi koji upućuju na određene pozitivne ishode
(Harper i sur., 2013; Scorgie i Sobsey, 2000). U području istraživanja partnerskih odnosa
roditelja djece s PSA rijetko je korištena kvalitativna metodologija. U malobrojnim
istraživanjima tek je dotaknuto pitanje kako se parovi zajednički suočavaju sa stresom (npr.
Downes i sur., 2021). Također, u istraživanjima se puno rjeđe ispituju roditelji odraslih osoba
s PSA, premda neki nalazi govore o tome da se zadovoljstvo brakom kod roditelja djece s PSA
smanjuje tijekom odrastanja djeteta.
Cilj ovog kvalitativnog istraživanja bio je dobiti uvid u doživljaj povezanosti stresa i kvalitete
partnerskih odnosa kod roditelja odraslih osoba s PSA. Poseban naglasak stavljen je na
ispitivanje iskustva suočavanja sa stresom i posljedicama stresa za partnerski odnos te na opis
razlike među spolovima. Istraživanje se provelo u sklopu projekta “Pružanje podrške odraslim
osobama s poremećajem iz spektra autizma” ostvarenog u suradnji ERF-a sa sveučilištem
Brigham Young University (BYU). Rezultati rada dobiveni su analizom intervjua 11 ispitanika,
roditelja odraslih osoba s poremećajem iz spektra autizma koji su u partnerskom odnosu
najmanje 6 mjeseci i žive u istom kućanstvu. Nalazi istraživanja pružaju dublji uvid u
roditeljska iskustva roditelja odraslih osoba s PSA. Potvrđena je teza da roditeljstvo djeteta s
PSA na neke partnerske odnose djeluje pozitivno, a na neke negativno, sukladno intrinzičnim i
ekstrinzičnim resursima koje obitelj ima na raspolaganju. Zamijećene su česte promjene u
prirodi partnerskog odnosa, pri čemu se trenutak saznavanja dijagnoze pokazao prijelomnim za
odnos. Prepoznati su najčešći načini suočavanja s roditeljskim stresom, ali i određene spolne
razlike. Na kraju su dostupne smjernice za praktičan rad, koje se mogu koristiti kao vodilje u
pružanju sveobuhvatne podrške roditeljima djece i odraslih osoba s PSA.

Abstract (english)

Studies indicate that parents of children with autism spectrum disorder (ASD) face significantly
higher levels of stress compared to other parents of children with developmental disabilities -
due to the heterogeneity of diagnoses and specific comorbidities (Saini et al., 2015), as well as
the severity of symptoms and costs associated with treatments and education (Ilias et al. 2018).
In addition to the stress directly related to having a child with ASD, parents often report a
reduced quality of marriage and family functioning (Harper et al., 2013; Scorgie and Sobsey,
2000). Qualitative methods are rarely used in the field of research on intimate relationships of
parents of children with ASD. A few studies have only partially examined how couples cope
with stress together (e.g. Downes et al., 2021). Also, in research, parents of adults with ASD
are examined much less often, although some findings indicate that marital satisfaction among
parents of children with ASD decreases as the child grows up.
The aim of this qualitative research was to gain insight into the experience of the association
between stress and the quality of intimate relationships among parents of adults with ASD.
Special emphasis is placed on the examination of the experience of coping with stress and the
consequences of stress for the intimate relationship, and on the description of differences
between the sexes. The research was conducted as part of the project "Providing support to
adults with autism spectrum disorder" realized in collaboration between Faculty of Education
and Rehabilitation Sciences and Brigham Young University (BYU). The results of the work
were obtained by analysing the interviews of 11 respondents, i.e. parents of adults with autism
spectrum disorder who have been in a relationship for at least 6 months and live in the same
household. The research findings provide a deeper insight into the parental experiences of
parents of adults with PSA. The thesis that parenting a child with PSA has a positive effect on
some relationships, and a negative effect on others, depending on the intrinsic and extrinsic
resources available to the family has been confirmed. Frequent changes in the nature of the
relationship were observed, whereby the moment of learning the diagnosis turned out to be a
turning point for the relationship. The most common ways of coping with parental stress are
recognized, as well as certain gender-based differences. At the end, guidelines for practical
work are available, which can be used as guidelines in providing comprehensive support to
parents of children and adults with ASD.

• Keywords: roditeljski stres; partnerski odnosi; poremećaj iz spektra autizma; roditelji odraslih osoba s autizmom; kvalitativno istraživanje
• Keywords (english): parental stress; intimate relationships; autism spectrum disorders; parents of adults with autism; qualitative research
• Language: croatian
• URN:NBN: urn:nbn:hr:158:543475
• 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: 2022-11-03 12:56:54