Parenting a child diagnosed with autism spectrum disorder (ASD) is challenging for mothers because of concerns related to behavior, difficulties in accessing specialized care, and lack of community acceptance, yet their stories in Jordanian context are still unknown. Common challenges in Jordan include financial burdens, lack of public awareness, and lack of specialized knowledge even among health care providers, which may lead to delays in obtaining the diagnosis and interventions for ASD.
A phenomenological descriptive approach was used to explore and understand the mothers’ everyday lived experiences of raising a child with ASD. Semistructured interviews were conducted with 14 mothers to identify their challenges so that nurses can identify gaps in services, empower families, and facilitate optimum care to these Jordanian families.
The main themes that emerged were (1) mothers’ journeys with the diagnosis, in which mothers recognized the abnormalities of their children, reported delays in getting the diagnosis and initiation of treatment, and described a wide range of reactions to the diagnosis from grief and guilt to a blessing from God; (2) the burden of care, by which mothers reported physical and emotional exhaustion, financial burdens, and concerns about the quality of available services; and (3) the consequences and the hurdle of having a child with ASD, which affected the family relationships and social life.
Jordanian mothers caring for children with ASD face several challenges, including physical, psychological, financial, and social challenges, in addition to limited specialized services. Identifying their unique challenges and needs are essential to support them, provide appropriate services and resources, and develop policies and guidelines for culturally competent quality services.