Faith, stigma, and resilience: a qualitative study of the experiences of mothers raising children with autism spectrum disorder in West Azerbaijan, Iran
摘要
Mothers of children with autism spectrum disorder (ASD) may experience substantial emotional, social, and practical challenges, compounded by societal stigma and cultural beliefs, especially in Iran. This study aimed to explore the experiences of Iranian mothers who have children with ASD, including the challenges they encounter, ways they cope, and how cultural and societal factors play a role in their experience.
MethodsThis qualitative descriptive study utilized purposive sampling to recruit 17 mothers of children with ASD from a single-center specialized treatment and rehabilitation setting in Urmia, Iran. Data were collected via individual, semi-structured interviews and subjected to qualitative content analysis.
ResultsFour main categories emerged from the qualitative analysis: (1) mothers’ perceptions of the causes of autism, (2) the evolving journey of coping with an autism diagnosis, (3) challenges faced by mothers of children with ASD, and (4) the profound and complex impact of autism on mothers’ lives. Regarding causal perceptions, mothers attributed autism to spiritual lenses, alternatively viewing it as a perceived divine purpose and meaning, framing autism as a test of faith, acceptance of preordained destiny, or perceived divine punishment and guilt. The coping trajectory advanced from initial confusion, shock, and protective concealment due to fear of stigma toward gradual acceptance and resource utilization. Key structural challenges included social stigma, limited public awareness, insufficient access to specialized centers, lack of psychological support, and significant financial strain. Finally, the condition profoundly disrupted maternal careers and family dynamics, leading to severe emotional distress, though mothers also reported finding existential meaning and personal growth through their caregiving role.
ConclusionsThis study underlines the significance of cultural and spiritual dimensions in shaping the experiences of Iranian mothers of children with ASD, highlighting both the challenges faced and sources of resilience identified. The findings indicate a need for increased societal awareness, culturally sensitive support, and improved access to services for mothers and families in comparable contexts.