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Parenting a child with autism spectrum disorder: A qualitative study
Prahbhjot Malhi1, Abhishek R Shetty2, Bhavneet Bharti3
1Professor, Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh, India.
Indian Journal of Public Health
|July 21, 2022
Summary
Caregivers of children with autism spectrum disorder (ASD) in India face significant barriers and stress post-diagnosis. There
Area of Science:
- Pediatric Psychology
- Neurodevelopmental Disorders
- Family Support Systems
Background:
- Limited research exists in India on caregiver needs post-autism spectrum disorder (ASD) diagnosis.
- Understanding caregiver perceptions and support requirements is crucial for effective interventions.
Purpose of the Study:
- To explore parental experiences and perceived barriers in obtaining an autism diagnosis for their children.
- To identify the perspectives and challenges faced by parents after an ASD diagnosis.
Main Methods:
- Qualitative study involving interviews with 28 caregivers of children diagnosed with ASD (ages 3-8).
- Thematic analysis was used to identify key themes from caregiver experiences before, during, and after diagnosis.
- Recruitment occurred until thematic saturation was reached.
Main Results:
- Nine themes emerged, including delayed help-seeking, emotional responses to diagnosis, increased parental stress, and challenges in family/community relationships.
- Caregivers reported heightened emotional reactions and difficulties navigating post-diagnostic support.
- Themes also highlighted negative family attitudes but also a sense of moving forward with hope.
Conclusions:
- Significant barriers and service gaps exist for autism support in India.
- There is a critical need for inclusive, culturally sensitive, and family-centered care models for parents of children with ASD.
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