Parental stress and intimate relationships of parents of adults with autism : a qualitative study

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.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