Quality of Life, Treatment Seeking Pathways and Out of Pocket Expenditure of parents with children with Autism Spectrum Disorder (ASD) in South Delhi

Authors

DOI:

https://doi.org/10.47203/IJCH.2024.v36i03.015

Keywords:

Autism Spectrum Disorder, Quality of Life, Out-of-pocket expenditure

Abstract

Background: Autism is a neurodevelopment disorder requiring continuous preventive, curative and rehabilitative management of child. Taking care of these children leads to parents face various challenges. Lack of awareness, associated stigma, misdiagnosis, inappropriate management impacts parents' lives in various aspects. Objectives: To assess quality of life of the parents of ASD children, find out various treatment-seeking pathways adopted by them, and estimate out-of-pocket expenditure for childcare. Methodology: Cross-sectional mixed method study was conducted for assessment of quality of life of parents (WHO-QOL BREF), out-of-pocket expenditure, treatment-seeking pathways opted by parents for ASD management. Results: Quality of life of parents were found to be affected in various domains, however psychological domain was most influenced. Age of  parents had an impact on  social domain. Delays in the identification of symptoms, confirmation of diagnosis, Lack of availability of treatment services, and non-integration of rehabilitative services were major loopholes in the treatment seeking. The median out-of-pocket expenditure was 16% of monthly family income. Conclusion & recommendation: Community awareness, medical fraternity sensitization, integration of all services for management and rehabilitation are keys towards better quality of life for parents. Financial support through health programs, NGOs, or insurance is a much-needed reform to reduce catastrophic health expenditure.

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Author Biographies

Farzana Islam, Professor Farzana Islam, Department of Community Medicine

Department of Community Medicine, Hamdard Institute of Medical Sciences & Research, New Delhi.

Varun Kashyap

Assistant Professor, Department of Community Medicine, HIMSR, New Delhi

Sushovan Roy

Professor, Department of Community Medicine, Hamdard Institute of Medical Sciences &Research, New Delhi

References

Baron-Cohen S. Leo Kanner, Hans Asperger, and the discovery of autism. The Lancet. 2015 Oct;386(10001):1329–30.

Autism spectrum disorders [Internet]. [cited 2024 June 29]. Available from: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders

Elsabbagh M, Divan G, Koh Y-J, Kim YS, Kauchali S, Marcín C, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012 Jun;5(3):160–79.

Mahapatra P, Pati S, Sinha R, Chauhan AS, Nanda RR, Nallala S. Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from Bhubaneswar, Odisha. Indian J Psychiatry. 2019;61(1):37–44.

Types of Autism - 5 Major Autism Spectrum Disorder Forms [Internet]. Autism 360TM. 2014 [cited 2021 Nov 27]. Available from: https://www.autism360.com/types-of-autism/

Mugno D, Ruta L, D’Arrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes. 2007 Apr 27;5:22.

Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG. The epidemiology and global burden of autism spectrum disorders. Psychol Med. 2015 Feb;45(3):601–13.

Fairfax A, Brehaut J, Colman I, Sikora L, Kazakova A, Chakraborty P, et al. A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability. BMC Pediatrics. 2019 Jul 1;19.

Alenazi DS, Hammad SM, Mohamed AE. Effect of autism on parental quality of life in Arar city, Saudi Arabia. J Family Community Med. 2020;27(1):15–22.

Kuru N, Piyal B. Perceived social support and quality of life of parents of children with Autism. Nigerian Journal of Clinical Practice. 2018 Sep 1;21(9):1182.

Milgram NA, Atzil M. Parenting stress in raising autistic children. J Autism Dev Disord. 1988 Sep;18(3):415–24.

Abbeduto L, Seltzer MM, Shattuck P, Krauss MW, Orsmond G, Murphy MM. Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. Am J Ment Retard. 2004 May;109(3):237–54.

Rogge N, Janssen J. The Economic Costs of Autism Spectrum Disorder: A Literature Review. J Autism Dev Disord. 2019 Jul 1;49(7):2873–900.

Papadopoulos D. Mothers’ Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. Brain Sci. 2021 Mar 2;11(3):309.

Liao X, Li Y. Economic burdens on parents of children with autism: a literature review. CNS Spectr. 2020 Aug;25(4):468–74.

Perumal V, Veeraraghavan V, Lekhra OP. Quality of life in families of children with autism spectrum disorder in India. Journal of Pharmacy Research. 2014 Jun 9;8:791–7.

Jain A, Ahmed N, Mahour P, Agarwal V, Shrivastav NK, Chandrakanta. Quality of Life of Caregivers of Autistic Children and Adolescents Visiting Health Facilities in Lucknow City, Uttar Pradesh, India: A Cross-sectional Study. Indian J Community Med. 2019;44(2):157–61.

Das S, Das B, Nath K, Dutta A, Bora P, Hazarika M. Impact of stress, coping, social support, and resilience of families having children with autism: A North East India-based study. Asian Journal of Psychiatry. 2017 Aug 1;28:133–9.

Subjective Burden and Depression in Mothers of Children with Autism Spectrum Disorder in India: Moderating Effect of Social Support | SpringerLink [Internet]. [cited 2021 Nov 27]. Available from: https://link.springer.com/article/10.1007/s10803-017-3233-y

Selvakumar N, Panicker A. Stress and Coping Styles in Mothers of Children with Autism Spectrum Disorder. Indian Journal of Psychological Medicine. 2020 Apr 25;42:225.

Divan G, Vajaratkar V, Desai M, strik lievers L, Patel V. Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India. Autism research?: official journal of the International Society for Autism Research. 2012 Jun 1;5:190–200.

76.pdf [Internet]. [cited 2021 Nov 27]. Available from: https://www.who.int/mental_health/media/en/76.pdf

Eapen V. Parental Quality of Life in Autism Spectrum Disorder: Current Status and Future Directions. Acta Psychopathologica [Internet]. 2016 Feb 1 [cited 2021 Nov 29];2(1). Available from: https://psychopathology.imedpub.com/abstract/parental-quality-of-life-in-autism-spectrum-disorder-current-status-and-future-directions-8501.html

Özgür BG, Aksu H, Eser E. Factors affecting quality of life of caregivers of children diagnosed with autism spectrum disorder. Indian J Psychiatry. 2018;60(3):278–85.

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Published

2024-06-30

How to Cite

1.
Islam F, Abdul Salam AS, Gautam R, Kashyap V, Roy S. Quality of Life, Treatment Seeking Pathways and Out of Pocket Expenditure of parents with children with Autism Spectrum Disorder (ASD) in South Delhi. Indian J Community Health [Internet]. 2024 Jun. 30 [cited 2024 Dec. 27];36(3):428-37. Available from: https://iapsmupuk.org/journal/index.php/IJCH/article/view/2849

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