واکاوی تجربه زیسته والدین کودکان دارای اختلال طیف اوتیسم از فرسودگی مراقبتی

لیلا سعیدی; مهران طاهری

Authors

Leila Saeidi Department of Educational Psychology, Razi University, Kermanshah, Iran Author
Mehran Taheri Department of Educational Psychology, Shahid Chamran University of Ahvaz, Ahvaz, Iran.

Keywords:

autism spectrum disorder, caregiving burnout, parents, lived experience, qualitative research, thematic analysis

Abstract

This study aimed to explore the lived experience of caregiving burnout among parents of children with autism spectrum disorder. This qualitative study was conducted using a descriptive phenomenological approach. The participants were 18 parents of children with autism spectrum disorder living in Tehran, Iran, who were selected through purposive sampling with attention to variation in parent gender, child age, educational level, and socioeconomic status. Data were collected through in-depth semi-structured interviews, and recruitment continued until theoretical saturation was reached. Each interview lasted between 45 and 75 minutes. After verbatim transcription, the data were analyzed through thematic analysis using NVivo software. To enhance trustworthiness, member checking, peer review, analytical memo writing, and an audit trail were used throughout the research process. Data analysis led to the identification of five main categories: physical and psychological exhaustion caused by continuous caregiving, erosion of parental identity and ambiguous grief, social isolation and stigma, economic pressure and confusion within the service system, and reconstruction of meaning and caregiving resilience strategies. Parents described caregiving burnout not merely as ordinary fatigue, but as a chronic, multilayered, and processual condition shaped by uninterrupted caregiving, sleep disruption, uncertainty about the child’s future, restricted social relationships, treatment costs, and inadequate professional and family support. At the same time, some parents described gradual acceptance, meaning-making, and peer support as important adaptive resources. Caregiving burnout among parents of children with autism spectrum disorder is a multidimensional phenomenon formed at the intersection of persistent child-related needs, limited support resources, financial strain, social stigma, and future-oriented concerns. The findings highlight the need for family-centered interventions, sustainable support services, parent education, psychological support for caregivers, and social policies aimed at reducing caregiving burden in families of children with autism.

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