Maternal emotional distress, caregiving burden, and service access among mothers of children with autism spectrum disorder: a qualitative study
TL;DR
The findings position maternal emotional distress and caregiving burden as public mental health concerns shaped by family, social, and service contexts and support a public mental health response that links maternal mental health promotion with accessible, coordinated, and family-centred care.
Abstract
Introduction Mothers raising children with autism spectrum disorder (ASD) may experience substantial emotional distress and caregiving burden, whilst family support andaccess to services can shape how these demands are managed. Yet in-depthqualitative evidence on these public mental health dimensions remains limited inSaudi Arabia. This study explored mothers’ experiences of raising a child diagnosedwith ASD. Methods Using a qualitative descriptive design informed by a contextualistposition, the study recruited ten mothers through a specialist autism centre inMadinah and the surrounding community. Trained female researchers, all registered nurses, conducted semi-structured interviews in Arabic, each lastingapproximately 60 to 90 minutes. Recordings were transcribed verbatim inArabic; a professional translator produced English transcripts, which a secondbilingual researcher checked before reflexive thematic analysis. Results and discussion Seven interrelated themes captured the mothers’ accounts: diagnosis as an emotional rupture; disruption of daily life by behavioural challenges; learning to understand the child across communication barriers; the cumulative toll of continuous care; adaptation through acceptance, patience, and faith; family support as a buffer or added burden; and compensating for uneven service experiences. Mothersdescribed substantial emotional and caregiving demands, but their experiences varied according to family support and access to services. One account of comprehensive state support provided an important counter-case to the morecommon experience of costly or fragmented provision. The findings position maternal emotional distress and caregiving burden as public mental health concerns shaped by family, social, and service contexts. They support a public mental health response that links maternal mental health promotion with accessible, coordinated, and family-centred care.