Challenges of the Caregivers in Managing a Child with Autism Spectrum Disorder— A Qualitative Analysis

Abstract

Background: Autism spectrum disorder (ASD) is a complex neurological condition resulting in impaired social interaction and difficulty in understanding verbal and nonverbal communication. Caring for children with ASDs is challenging for both children and their caregivers. The child suffering from ASD starts to show the developmental outcome during early 2.5–3 years and continues thereafter till the child turns to an adult. Many caregivers face severe financial crises, high out-of-pocket healthcare expenses, and unemployment. Previous studies have reported a plethora of psychosocial problems affecting caregivers of children with ASD, ranging from stress, depression, anxiety, restrictions of activities, strain in marital relationships, and diminished physical health. Objective: This article aims to explore the concerns of the caregivers of children suffering from ASD. Aggregate themes were prepared based upon Corley and Gioia’s method of data structuring. Methods: After development and validation of an interview schedule, verbatim of seven caregivers of children with ASD were imported on the Atlas.ti version 8. Initial coding and final coding were followed by extracting the aggregate themes. Lincoln and Guba’s framework was used to assess the quality criteria as a part of qualitative analysis. Results: Caregivers face various challenges while caring for a child with ASD, with a negative impact on physical health, psychological well-being, societal reactions, and financial balance. Caregivers reported concerns related to service availability for ASD, poorly coping with the diagnostics, and disease processes. Conclusions: Caregivers undergo a lot of problems while taking care of a child with ASD. Health professionals must have an understanding of these problems and must provide the education and information for a better management. Furthermore, the findings of this study have policy implications for the health authorities for providing better health services to children diagnosed with ASD.

The Relationship between Anxiety Symptoms and Perceived Quality of Life among Caregivers of Children with Autism Spectrum Disorder in the Amazon

“…Therefore, although the main reasons identified as causes of anxiety and reduced perceived quality of life have not been investigated in the present study, several factors involved in caring for a child with autism may be related. Tathgur and Kang [27] aimed to assess the concerns of caregivers of children with ASD and observed that caregivers face several challenges that negatively impact their physical health, psychological well-being, social reactions, and financial balance. Additionally, caregivers reported concerns related to the availability of ASD services and poorly coping with the diagnostics.…”

Relationship between Perception of Anxiety Symptoms and Quality of Life of Caregivers of Children with Autism Spectrum Disorder in a Reference Center in Amazon

“…Therefore, although the main reasons identified as causes of anxiety and reduced perceived quality of life have not been investigated in the present study, several factors involved in caring for a child with autism may be related. Tathgur and Kang [25] aimed to explore the concerns of the caregivers of children suffering from ASD, and they observed that caregivers face various challenges while caring for a child with ASD, with a negative impact on physical health, psychological wellbeing, societal reactions, and financial balance. Caregivers reported concerns related to service availability for ASD, poorly coping with the diagnostics, and disease processes.…”

Transformed by Parenting Experience: Perspectives, Challenges, and Optimism of Parents of Children with Autism Spectrum Disorder in Their Adulthood

“…It is an extremely daunting task to find the right person to look after a child with autism because there are so many concerns attached to it that you do not see when caring for a neurotypical child. Many caregivers may face many problems when the child is under their care, ranging from stress, restriction of other activities, anxiety, and diminished physical health (Tathgur et al, 2021).…”