Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Article


Lockwood Estrin, G., Bhavnani, S., Arora, R., Gulati, S. and Divan, G. 2023. Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India. International Journal of Environmental Research and Public Health. 20 (7), p. 5291. https://doi.org/10.3390/ijerph20075291
AuthorsLockwood Estrin, G., Bhavnani, S., Arora, R., Gulati, S. and Divan, G.
Abstract

Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world’s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.

JournalInternational Journal of Environmental Research and Public Health
Journal citation20 (7), p. 5291
ISSN1661-7827
Year2023
PublisherMDPI
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Anyone
Digital Object Identifier (DOI)https://doi.org/10.3390/ijerph20075291
Publication dates
Print28 Mar 2023
Online28 Mar 2023
Publication process dates
Accepted06 Mar 2023
Deposited29 Mar 2023
FunderWellcome Trust
Copyright information© 2023, The Authors
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