The experience of parents in disclosure of an autism spectrum disorder

Kao prvi važan faktor u procesu suočavanja roditelja s postavljenom dijagnozom poremećaja iz spektra autizma (PSA), ističe se upravo postupak priopćavanja dijagnoze. Cilj rada je bio ispitati iskustva roditelja u postupku priopćavanja sumnje ili dijagnoze PSA-a te prikazati povezanost zadovoljstva roditelja s obilježjima samog postupka – prostornim i vremenskim odrednicama, obilježjima verbalne i neverbalne komunikacije stručnjaka te dobivenim informacijama. U istraživanju su sudjelovala 52 roditelja djece s poremećajem iz spektra autizma rane i predškolske dobi (0 do 7) kojoj su sumnja ili dijagnoza postavljene u prethodnih 18 mjeseci. Za potrebe istraživanja konstruiran je Upitnik za ispitivanje iskustva roditelja u postupku dijagnostike PSA-a. Rezultati su pokazali relativno visok stupanj zadovoljstva roditelja postupkom priopćavanja dijagnoze PSA-a. 82,6 % sudionika svoje zadovoljstvo na skali od 1 do 10 izražava visokom ocjenom (od 6 do 10). Utvrđeno je kako postoji značajna povezanost između zadovoljstva roditelja i prisutnosti pozitivnih obilježja u postupku dijagnostike i priopćavanja dijagnoze. Roditelji pokazuju više ukupno zadovoljstvo postupkom priopćavanja dijagnoze u kojem je bilo više pozitivnih obilježja u komunikaciji stručnjaka, obilježjima prostora i vremena i dobivenim informacijama. Temeljem rezultata istraživanja i dostupnih podataka u literaturi, sastavljen je niz smjernica stručnjacima o tome na koji način priopćiti dijagnozu.As the first important factor in the process of confronting parents with a diagnosis of an autism spectrum disorder (ASD) is the disclosure of a diagnosis that stands out. The aim of this study was to examine the experiences of parents with the disclosure of a diagnosis of ASD and to investigate the relationship between the level of parent satisfaction with the disclosure of a diagnosis to the characteristics of the procedure – determinants of time and space, characteristics of verbal and nonverbal communication of the professionals and information obtained. The study included 52 parents of preschool children with autism (0 do 7 years) who was diagnosed in previous 18 months. For the purposes of this survey, a Questionnaire for examining parental experiences in the diagnostic procedure of an autism spectrum disorder was designed. The results showed relatively high level of parental satisfaction with disclosure of the diagnosis of ASD. 82,6 percent express their satisfaction on a scale from 1 to 10 with a high score (from 6 to 10). Data analysis showed that there is a statistically significant correlation between parental satisfaction and the presence of positive characteristics of the process of disclosure. Parents were more likely to be satisfied if there were more positive characteristics in the diagnostic procedure, including determinants of time and space, characteristics of verbal and nonverbal communication of the professionals and characteristics of information obtained. Based on the research results and data available in the literature, the recommendations for practice were developed on how to share a diagnosis of ASD