Exploring Challenges and Needs of Parents Providing Care to Children with Autism Spectrum Disorders: A Qualitative Study

Abstract

Background: The circumstances and needs of children with autism spectrum disorder (ASD) affect children and their families. Objectives: This study aimed to explore the challenges and needs of parents caring for children with ASD. Methods: An exploratory qualitative method and the conventional content analysis method were employed in the present study. Participants were 18 parents with children with ASD in Tehran who were recruited by the accessible sampling method. To collect data, semi-structured, face-to-face, and in-depth interviews were used. The interviews were audio-recorded and transcribed verbatim into Microsoft Word software. Qualitative analysis was performed using the content analysis approach. Results: Parents had three main needs in caring for their children: (1) first, issues and problems related to diagnosis, treatment, and rehabilitation, including three categories (issues and problems of diagnosis and treatment, issues and problems of rehabilitation, and inadequate therapeutic support); (2) second, issues and problems related to parents, including four categories (parents’ lack of knowledge and awareness about ASD, lack of life skills, daily problems of parenting, and familial & marital issues); and (3) third, financial, cultural, and social issues, including two categories (financial problems and social & cultural problems). Conclusions: The needs and challenges mentioned by the parents of children with ASD highlighted the need for medical, educational, and counseling services and emotional and material support from the community and the government. Planning and implementing support programs enable parents to face problems strategically, which ultimately improves their quality of life.