Exploring the expectations and experiences of parent’s of children with autism spectrum disorder regard delivered care in Tabriz

Abstract

Introduction: Autism spectrum disorder (ASD) is a neurological disorder that is often identified early-life and is a lifelong disorder. Since then, most people spend ASD in their home environment, role of parents is important in identifying the problems of children with ASD spectrum disorder. Purpose: The purpose of this study is to identify the expectations and experiences of service recipients in the field of services provided to children with ASD in Tabriz. Methods: This is a qualitative phenomenological study with participation of 50 people through 25 semi-structured interviews and 4 focus group discussions in the Comprehensive Autism Center, Autism School, Autism Association, Razi psychiatry Hospital in Tabriz in 2018-2019. The conformability of the study result was approved by participants and confirmed by experts. Data were analyzed manually using content analysis. Result: Based on the findings of the present study, the challenges facing children with ASD from the perspective of parents regarding health services include the diagnosis and treatment process, rehabilitation services, quality of services and parent education programs. Also, regarding the structure and organization of facilities most important issues are the structure and organization of facilities, human resource, service organizations and structural weaknesses. On the other hand, with regard to the social and cultural challenges facing children suffering from ASD, problems with ASD, recreational facilities and urban services were addressed. On the other hand, supportive programs for ASD and recreational facilities and urban services considered as most important social and cultural challenges for children with ASD. Conclusion: The lack of coordination between the centers of autism, the lack of adequate financial support from the government, the lack of attention to the needs of children with ASD in society, and the lack of appropriate programs to inform parents are the most important challenges posed by parents of children with ASD. Development of mental health programs for families with ASD children, the provision of temporary nursing homes for children with ASD, increased training of professionals in the field of ASD and informs community regard ASD can help to improve the conditions for these families.