Abstract
This review study attempts to critically examine the existing qualitative literature relevant to caregivers of autism spectrum disorder (ASD) in India. Caregiving for ASD is a unique journey filled with experiences that pose challenges and opportunities; while providing unwavering support and sensitivity for individuals on the spectrum. Qualitative research methods provide avenues to understand this exclusive experience which equips the professionals and policymakers to understand the distinctive needs of the caregivers and elevate their well-being. A database search has been conducted and the selected literature has been reviewed thoroughly. The results are discussed in a narrative style to understand the methodologies used, various hurdles and aspects that can affect their well-being along with recommendations for future exploration.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Aspers, P., & Corte, U. (2019). What is Qualitative in Qualitative Research. Qualitative Sociology, 42(2), 139–160. https://doi.org/10.1007/s11133-019-9413-7
Bashir, A., Tariq, A., Khan, A., Ali, I., & Azman, A. (2023). The challenges and coping strategies of single mothers caring for children with special needs: Experiences from Kashmir, India. Asian Social Work and Policy Review, 17(1), 15–26. https://doi.org/10.1111/aswp.12265
Behal, A. (2019, December 26). Qualitative Research in India: Pitfalls and Opportunities. LinkedIn. https://www.linkedin.com/pulse/qualitative-research-india-pitfalls-opportunities-anil-behal-phd
Bishop, S., L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of Perceived Negative Impact in Mothers of Children With Autism Spectrum Disorder. 112(6), 450-. https://doi.org/10.1352/0895-8017(2007)112[450:popnii]2.0.c0;2
Creswell, J. W. (2009). Research Design—Qualitative, Quantitative and Mixed Methods Approaches (3rd ed.). SAGE Publications Ltd.
Creswell, J. W., Hanson, W. E., Clark Plano, V. L., & Morales, A. (2007). Qualitative Research Designs: Selection and Implementation. The Counseling Psychologist, 35(2), 236–264. https://doi.org/10.1177/0011000006287390
Dalal, A. K. (2011). Indigenisation of Psychology in India. Psychology Teaching Review, 17(2), 29–37.
Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58(7), 1323–1335. https://doi.org/10.1016/S0277-9536(03)00330-7
Das, S., Das, B., Nath, K., Dutta, A., Bora, P., & Hazarika, M. (2017). Impact of stress, coping, social support, and resilience of families having children with autism: A North East India-based study. Asian Journal of Psychiatry, 28, 133–139. https://doi.org/10.1016/j.ajp.2017.03.040
Desai, M. U., Divan, G., Wertz, F. J., & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3–4), 613–637. https://doi.org/10.1177/1363461512447139
Ferrari, R. (2015). Writing narrative style literature reviews. Medical Writing, 24(4), 230–235. https://doi.org/10.1179/2047480615Z.000000000329
Gehanno, J.-F., Rollin, L., & Darmoni, S. (2013). Is the coverage of google scholar enough to be used alone for systematic reviews. BMC Medical Informatics and Decision Making, 13(1), 7. https://doi.org/10.1186/1472-6947-13-7
Green, B.N., Johnson, C.D., & Adams, A.D.C. (2001). Writing Narrative Literature Review For Peer-Reviewed Journals: Secrets of The Trade. J Sports Chiropr Rehabil, 15, 15–19.
Gupta, N., Khanna, M., Garg, R., Sethi, V., Khattar, S., Tekkar, P., Maria, S., Gupta, M., Saxena, A., Gupta, P., & Ann Schuchert, S. (2023). Exploration of caregiver experience for children with ASD: An in-depth perspective. Advances in Autism, 9(3), 217–240. https://doi.org/10.1108/AIA-09-2022-0044
Gusenbauer, M., & Haddaway, N. R. (2020). Which academic search systems are suitable for systematic reviews or meta‐analyses? Evaluating retrieval qualities of Google Scholar, PubMed, and 26 other resources. Research Synthesis Methods, 11(2), 181–217. https://doi.org/10.1002/jrsm.1378
Jagan, Dr. V., & Satyaseelan, Dr. A. (2020). “It has taken me into a whole new life and world, a turning point”: Father’ Experiences of the Diagnosis of Autism. The International Journal of Indian Psychology, 8(2), 1102–1115.
Kapoor, R., & Pradhan, M. R. (2022). Awareness, Challenges and Coping Strategies of the Parents having Children with Autism Spectrum Disorder (ASD) in Mumbai, India. Demography India, 51(1), 109–125.
Lach, L. M., Kohen, D. E., Garner, R. E., Brehaut, J. C., Miller, A. R., Klassen, A. F., & Rosenbaum, P. L. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation, 31(9), 741–752. https://doi.org/10.1080/08916930802354948
Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and Well-Being in Parents of Children with Autism Spectrum Disorders (ASD). Journal of Autism and Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9
Levitt, H. M., Morrill, Z., Collins, K. M., & Rizo, J. L. (2021). The methodological integrity of critical qualitative research: Principles to support design and research review. Journal of Counseling Psychology, 68(3), 357–370. https://doi.org/10.1037/cou0000523
Liji, J., & Delariarte, C. F. (2023). Experience of Psychological Distress: A Qualitative Inquiry into mothers of Children with Autism Spectrum Disorder. IAHRW International Journal of Social Sciences Review, 11(1), 7–14.
Lockwood Estrin, G., Bhavnani, S., Arora, R., Gulati, S., & Divan, G. (2023). Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India. International Journal of Environmental Research and Public Health, 20(7), 5291. https://doi.org/10.3390/ijerph20075291
Maenner, M. J., Shaw, K. A., Baio, J., EdS1, Washington, A., Patrick, M., DiRienzo, M., Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-C., Harrington, R. A., … Dietz, P. M. (2020). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR. Surveillance Summaries, 69(4), 1–12. https://doi.org/10.15585/mmwr.ss6904a1
Mahapatra, P., Sahoo, K., Jitendriya, P., Samal, M., & Pati, S. (2021). Qualitative research methods in psychiatry in India: Landscaping the terrain. Indian Journal of Psychiatry, 63(1), 5. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_665_20
Malhi, P., Shetty, A. R., Bharti, B., & Saini, L. (2022). Parenting a child with autism spectrum disorder: A qualitative study. Indian Journal of Public Health, 66(2), 121–127. https://doi.org/10.4103/ijph.ijph_1779_21
MAXQDA 2022. (2021). [Computer software]. VERBI Software. maxqda.com
Maxwell, J. A. (1998). Designing a Qualitative Study. In The Sage Handbook of Applied Social Research Methods (pp. 69–100).
Montes, G., & Halterman, J. S. (2007). Psychological Functioning and Coping Among Mothers of Children With Autism: A Population-Based Study. Pediatrics, 119(5), e1040–e1046. https://doi.org/10.1542/peds.2006-2819
Noori, F., Tiwari, S., Padickaparambil, S., & Pothiyil, D. I. (2023). Parenting Challenges and Reasons for Not Availing Rehabilitation Services Among Families of Adolescents with Autism Spectrum Disorder: A Qualitative Study. Indian Journal of Psychological Medicine, 45(3), 263–270. https://doi.org/10.1177/02537176221096769
O.Nyumba, T., Wilson, K., Derrick, C. J., & Mukherjee, N. (2018). The use of focus group discussion methodology: Insights from two decades of application in conservation. Methods in Ecology and Evolution, 9(1), 20–32. https://doi.org/10.1111/2041-210X.12860
Ramachandran, R. (2020). A qualitative study on perspective of parents of children with autism on the nature of parent–professional relationship in Kerala, India. Autism, 24(6), 1521–1530. https://doi.org/10.1177/1362361320912156
Ranjan, R., Jain, M., Kumar, P., Sethi, G., & Singh, J. (2023). Exploring the path to pathos “Lived experiences of parents of children with autism spectrum disorder”: An interpretative phenomenological analysis. Indian Journal of Psychiatry, 65(3), 310. https://doi.org/10.4103/indianjpsychiatry.indianjpsychiatry_71_22
Read, J. (1991). There was never really any choice. Women’s Studies International Forum, 14(6), 561–571. https://doi.org/10.1016/0277-5395(91)90026-E
Samadi, H., & Samadi, S. A. (2020). Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature. Brain Sciences, 10(8), 557. https://doi.org/10.3390/brainsci10080557
Santaro, H. (2023). The push for more equitable research is changing the field (2023 Trends Report Vol.54No.1; Monitor on Psychology, p. 49). American Psychological Association. https://www.apa.org/monitor/2023/01/trends-inclusivity-psychological-research
Singh, J. S., & Bunyak, G. (2019). Autism Disparities: A Systematic Review and Meta-Ethnography of Qualitative Research. Qualitative Health Research, 29(6), 796–808. https://doi.org/10.1177/1049732318808245
Sivagnanapandian, D., & Raju, H. (2021). Parent’s perception on Autism Spectrum Disorder (ASD)" a Focus Group Discussion Study. Journal of Child Language Acquisition and Development, 9(4), 362–384.
Tathgur, M. K., & Kang, H. K. (2021). Challenges of the Caregivers in Managing a Child with Autism Spectrum Disorder—A Qualitative Analysis. Indian Journal of Psychological Medicine, 43(5), 416–421. https://doi.org/10.1177/02537176211000769
Thelwall, M., & Nevill, T. (2021). Is research with qualitative data more prevalent and impactful now? Interviews, case studies, focus groups and ethnographies. Library & Information Science Research, 43(2), 101094. https://doi.org/10.1016/j.lisr.2021.101094
Viswanathan, P., Kishore, M. T., & Seshadri, S. P. (2022). Lived Experiences of Siblings of Individuals with Autism Spectrum Disorder in India: An Interpretative Phenomenological Analysis. Indian Journal of Psychological Medicine, 44(1), 45–52. https://doi.org/10.1177/02537176211029111
Wilkinson, S. (1998). Focus group methodology: A review. International Journal of Social Research Methodology, 1(3), 181–203. https://doi.org/10.1080/13645579.1998.10846874
Acknowledgements
The authors acknowledge the support given by the Directorate of Research and Innovation and Department of Psychology, School of Social Sciences and Humanities, CMR University.
Funding
This research received no specific funding from any agency.
Author information
Authors and Affiliations
Contributions
Both authors have approved the final manuscript for publication.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare no conflict of interest related to this review paper.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Tejo Prasanna, N.V., John, R. Caregiving for Individuals with Autism Spectrum Disorder: A Narrative Review of Qualitative Literature from Indian Context. J. Psychosoc. Rehabil. Ment. Health (2024). https://doi.org/10.1007/s40737-024-00391-6
Received:
Accepted:
Published:
DOI: https://doi.org/10.1007/s40737-024-00391-6