Challenges faced by the Parents of Children with Autism Spectrum Disorder- A Phenomenological Inquiry

Abstract

Objectives: The study aimed to explore the challenges faced by parents of children with Autism Spectrum Disorder (ASD). Study Design: A phenomenological design was used. Place and duration of study: A total of 8 participants were recruited from Children Hospital Complex and Institute of Child Health (CHC & ICH), Lahore and the study was conducted from April 2022 to July 2022.  Material and Methods: An interview guide comprises semi-structured questions eliciting information regarding lived experiences, and social and health support systems in seeking therapies for autistic children was utilized. Face-to-face in-depth interviews of the potential study participants was conducted.  Results: Using thematic analysis, three major themes and eight subthemes emerged from the data. Themes are; parental issues, socio-cultural issues, and health care system issues and sub-themes are; lack of awareness, self-negligence and health issues, financial and time constraints, the first response to diagnosis, stigma and societal myths, misdiagnosis, unaffordable child therapies, lack of treatment guidance and parent counseling session.

Conclusion: This study has highlighted the primary caregiver’s perceptions, experiences and psycho-social support system of a disabled child in Pakistan and findings are crucial for Sustainable Development Goals by the United Nations (SDG-3); to ensure healthy lives and to promote the well-being of all, all ages. Adult mental health issues should consider an integral part of child health intervention programs for ASD children. The provision of additional education and training sessions and de-stigmatization of ASD may help in waning the barriers for parents in Pakistan.