Abstract

Aim: The present qualitative study was carried out to clarify the experiences of mothers with respect to living with children with ASD.

Background: Limited studies have been conducted on the experiences of mothers and their challenges in living with children with Autism Spectrum Disorder (ASD) in western Iran.

Methods: A qualitative study utilizing the content analysis approach was designed to elucidate the experiences of mothers living with children with ASD. Participants were purposefully selected based on predefined criteria. The study was conducted from March to September 2023 at the Autism Spectrum Disorder Research Center in Hamedan, Iran. Sampling continued until data saturation was achieved. Interview transcripts were analyzed using a content analysis strategy, and main themes and subthemes were identified. MAXQDA version 10 software was used for data management during analysis.

Results: Twelve participants were enrolled in this study. Six main themes and 15 subthemes were identified, representing the challenges of mothers living with children with ASD in Iran. The study themes included personal development hindrance (constant engagement, reduced self-attention, limited personal activities), social non-acceptance (social isolation and others' judgmental behaviors), lack of support infrastructure (limited rehabilitation centers, limited care centers, and heavy financial burden), caretaking responsibility (constant worry for the child, stereotypical behaviors, and sleep disturbances in the child), constant attention requirement (continuous need for care and constant support), and unequal attention within the family (reduced attention to other children and decreased marital intimacy).

Conclusion: The results of this research have indicated that mothers of children with ASD experience high levels of physical and psychological stress and are vulnerable to harm. Therefore, providing supportive resources to ensure their mental well-being is essential.

Keywords: Autism spectrum disorders, mothers' challenges, personal development hindrance, caretaking responsibility, physical and psychological stress, mental well-being.