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Challenges of the Caregivers in Managing a Child with Autism Spectrum Disorder- A Qualitative Analysis
Manmeet Kaur Tathgur1, Harmeet Kaur Kang1
1Chitkara School of Health Sciences, Chitkara University, Punjab, India.
Insights
Caregivers of children with autism spectrum disorder (ASD) experience significant physical, psychological, and financial challenges. Addressing these concerns is crucial for improving care and support systems for families affected by ASD.
Area of Science:
- Neurology
- Psychology
- Sociology
Background:
- Autism spectrum disorder (ASD) presents significant challenges in social interaction and communication.
- Caregiving for children with ASD impacts families financially and emotionally, leading to stress, depression, and anxiety.
- Caregiver burden extends to marital relationships and physical health, affecting overall well-being.
Purpose of the Study:
- To explore the multifaceted concerns of caregivers for children with autism spectrum disorder.
- To identify aggregate themes related to caregiver experiences using established qualitative data structuring methods.
Main Methods:
- A validated interview schedule was used to collect verbatim accounts from seven caregivers of children with ASD.
- Qualitative analysis involved initial and final coding, theme extraction, and quality assessment using Lincoln and Guba's framework.
- Data was managed and analyzed using Atlas.ti version 8 software.
Main Results:
- Caregivers reported substantial challenges impacting their physical health, psychological well-being, social interactions, and financial stability.
- Concerns were raised regarding the availability of services for ASD and difficulties in coping with diagnosis and disease management.
- The study highlights the negative impact of caregiving on multiple life domains for individuals supporting children with ASD.
Conclusions:
- Caregivers of children with ASD face numerous difficulties that necessitate greater understanding and support from health professionals.
- Education and information provision are vital for effective management of challenges faced by these caregivers.
- Policy implications include the need for enhanced health services and support systems for children diagnosed with ASD and their families.
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.
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