Challenges and unmet needs of mothers of preschool children with autism spectrum disorders in Tunisia: a qualitative study

Abstract

Introduction: Autism spectrum disorder (ASD) is a life-changing condition, not only for the child but also for the mother and the usual caregiver. In fact, a child recently diagnosed with ASD is a real challenge to mothers´ adaptation, involves their resources, and gives rise to a set of needs. This study explores the unmet needs and experiences of mothers of ASD children in the Tunisian context.

Methods: a qualitative phenomenological design was chosen for this study and a semi-structured interview was used for eight mothers raising an autistic preschooler child.

Results: the results indicate significant denial and rejection following the announcement of the diagnosis. To cope with this, reliance on religion has helped foster acceptance. Although informal support (from family and friends) has sometimes been mentioned, an increased need for training, social and financial support has been expressed and is a major concern given the high cost of TSA services.

Conclusion: this study provides a deeper understanding of mothers' needs following the announcement of the diagnosis of ASD. These unmet needs should be taken into account when designing interventions strategies for children with ASD to help mothers cope and parent a child with ASD.