Document Type : Original Article
Author
PhD in Psychology and Education of Exceptional Children, Faculty of Psychology and Education, University of Tehran, Tehran, Iran
Abstract
Background: Autism spectrum disorder, as one of the most prevalent neurodevelopmental disorders, not only imposes specific challenges, pressures, and difficulties on children but also confronts parents with numerous difficult experiences, consequences, and stressors across various aspects of life. Understanding and exploring parents' lived experience can reveal different dimensions of parents' lives and represent a step toward reducing their difficulties and improving their quality of life.
Aim: The purpose of the present study was to identify and analyze the various dimensions of the lived experience of parents of children with autism spectrum disorder
Method: The present study employed a qualitative approach based on interpretive phenomenology. Participants were selected using purposive sampling and were interviewed in accordance with the study's inclusion criteria. Although theoretical saturation was reached after the eleventh interview, data collection continued through the sixteenth interview to ensure adequate validation. The research instrument consisted of in-depth semi-structured interviews. The data obtained from the interviews were analyzed using Colaizzi's seven-step method with the assistance of MAXQDA software.
Results: In the domain of identifying challenges, pressures, and difficulties, four main themes (emotional and psychological challenges, communicative and social challenges, economic challenges, and caregiving challenges) and 16 sub-themes were extracted. In the domain of proposing solutions aimed at improving parents' lives, five main themes (social and family support, access to therapeutic and educational services, mental health, development of parent–child communication skills, and policymaking and legal support) and 20 sub-themes were identified.
Conclusions: Based on the findings, it can be concluded that parents of children with autism spectrum disorder face emotional, psychological, communicative, social, economic, and caregiving challenges and difficulties. Accordingly, it is recommended that policymakers and relevant authorities design and implement support programs grounded in parents' lived experiences, with the aim of enhancing the quality of life of parents of children with autism spectrum disorder.
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