Abstract
Asian Indian immigrant parents of children with intellectual and developmental disabilities (IDD) have unique experiences and challenges grounded within their cultural contexts and migration to United States. This study sought to describe these experiences using qualitative method. Open-ended interviews were individually conducted with 15 Asian Indian parents (8 mothers, 7 fathers) whose children were diagnosed with Down Syndrome, Autistic Disorder, or Pervasive Developmental Disorder- Not Otherwise Specified. Qualitative analysis generated 16 themes that were grouped into five domains: Cultural explanations, community response, and migration; impact on the self and family; sources of stress and support; a unique parenting approach; and hopes and fears for the future. In particular, parents described their local community’s initial struggles with acceptance of IDD grounded within religious explanations of the disability. Similar to parents of children with IDD from other cultural groups, these parents described family support, broader social awareness and acceptance, and access to resources as sources of support and the lack of these factors as contributing to stress. A unique parenting approach emerged in reference to the child with IDD that included adjusting academic aspirations for the child, taking a practical, “1 day at a time” approach, and efforts to pass on cultural heritage. Parents voiced concerns about the future care of their child when they would not be around, as well as their hopes. These findings suggest the importance of attending to cultural meanings and local contexts when understanding parenting experiences.
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References
Ali, A., Hassiotis, A., Strydom, A., & King, M. (2012). Self stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities, 33, 2122–2140.
Azmi, S., Hatton, C., Emerson, E., & Caine, A. (1997). Listening to adolescents and adults with intellectual disabilities from South Asian Communities. Journal of Applied Research in Intellectual Disabilities, 10(3), 250–263.
Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behavior problems and parenting stress over time. Journal of Intellectual Disability Research, 47, 217–230.
Bhattacharya, G., & Schoppelrey, S. L. (2004). Preimmigration beliefs of life success, postimmigration experiences, and acculturative stress: South Asian immigrants in the United States. Journal of Immigration Health, 6, 83–92.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
Bristol, M. M., & Schopler, E. (1984). The family in the treatment of Autism: Purpose, treatment procedures, and efficacy. In T. B. Karasu (Ed.), Psychiatric treatment manual I: Treatment of pervasive developmental disorders. Washington, DC: American Psychiatric Association.
CIA World Fact Book. (2014). India. Retrieved from https://www.cia.gov/library/publications/the-world-factbook/geos/in.html.
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers in pre-school children with Autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280.
Daley, T. C. (2002). The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry, 39, 531–550.
Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science and Medicine, 58, 1323–1335.
Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. (2010). Perceptions about intellectual disability: A qualitative study from Vellore, South India. Journal of Intellectual Disability Research, 54(8), 736–748.
Fowler, J. D. (1997). Hinduism: Beliefs and practices. Brighton: Sussex Academic Press.
Gabel, S. (2004). South Asian Indian cultural orientations toward mental retardation. Mental Retardation, 42, 12–25.
Green, S. (2003). “What do you mean, ‘What’s wrong with her?’”: Stigma in the lives of families of children with disabilities. Social Science and Medicine, 57, 1361–1374.
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18, 59–82.
Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19, 417–425.
Gupta, A., & Singhal, N. (2004). Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal, 15, 22–35.
Hatton, C., & Emerson, E. (2009). Does socioeconomic position moderate the impact of child behavior problems on maternal health in South Asian families with a child with intellectual disabilities? Journal of Intellectual & Developmental Disability, 34(1), 10–16.
Jegatheesan, B. (2009). Cross-cultural issues in parent-professional interactions: A qualitative study of perceptions of Asian American mothers of children with developmental disabilities. Research & Practice for Persons with Severe Disabilities, 34(3), 123–136.
Jegatheesan, B., Miller, P., & Fowler, S. (2010). Autism from a religious perspective: A study of parental beliefs in south Asian muslim immigrant families. Focus on Autism and other Developmental Disabilities, 25, 98–109.
John, A. (2012). Stress among mothers of children with intellectual disabilities in urban India: Role of gender and maternal coping. Journal of Applied Research in Intellectual Disabilities, 25, 372–382.
Kearney, P. K., & Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34(5), 582–592.
Kumar, V. G. (2008). Psychological stress and coping strategies of the parents of mentally challenged children. Journal of the Indian Academy of Applied Psychology, 34(2), 227–231.
Matsumoto, D. (2001). Emotion in Asia: Linking theories and data around the world. (Introduction to the special section on emotion). Asian Journal of Social Psychology, 4(2), 163–164.
Meadan, H., Stoner, J. B., & Angell, M. E. (2009). Review of literature related to the social, emotional, and behavioral adjustment of siblings of individuals with Autism Spectrum Disorder. Journal of Developmental and Physical Disabilities, 22, 83–100.
Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5(22), 109.
Oh, H., & Lee, E. O. (2009). Caregiver burden and social support among mothers raising children with developmental disabilities in South Korea. International Journal of Disability, Development, and Education, 56(2), 149–167.
Osajima, K. (2005). Asian Americans as the model minority: An analysis of the popular press image in the 1960s and 1980s. In K. Ono (Ed.), A Companion to Asian American Studies (pp. 215–225). Malden, MA: Blackwell Publishing.
Raghavan, C., Weisner, T. S., & Patel, D. (1999). The adaptive project of parenting: South Asian families with children with developmental disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 34(3), 281–291.
Ravindran, N., & Myers, B. J. (2012a). Cultural influences on perceptions of health, illness, and disability: A review and focus on autism. Journal of Child and Family Studies, 21, 311–319.
Ravindran, N., & Myers, B. J. (2012b). Beliefs and practices regarding autism in Indian families now settled abroad: An internet survey. Focus on Autism and Other Developmental Disabiltieis, 28, 44–53.
Richman, D. M., Belmont, J. M., Kim, M., Slavin, C. B., & Hayner, A. K. (2009). Parenting stress in families of children with Cornelia de Lange syndrome and Down syndrome. Journal of Developmental and Physical Disabilities, 21, 537–553.
Woolfson, L., & Grant, E. (2005). Authoritative parenting and parental stress in parents of pre-school and older children with developmental disabilities. Child: Care, Health and Development, 32(2), 177–184.
Sovani, A. (2009). Subharthis in India: Destigmatizing Schizophrenia, a move toward inclusion. In C. A. Marshall, E. Kendall, M. E. Banks, & R. M. Grover (Eds.), Disabilities: Insights from across fields around the world (Vol. 1, pp. 231–242)., The Experience: Definitions, Causes, and Consequences Santa Barbara, CA: Praeger/ABC-CLIO.
Suinn, R. M., Ahuna, C., & Khoo, G. (1992). The Suinn-Lew Asian Self-Identity Acculturation Scale: Concurrent and factorial validation. Educational and Psychological Measurement, 52(4), 1041–1046.
US Census Bureau. (2004). We the people: Asians in the United States. Retrieved September 12, 2011, from http://www.census.gov/prod/2004pubs/censr-17.pdf.
US Census Bureau. (2010). The Asian population: 2010 (US Census publication no. C2010BR-11). Retrieved from http://www.census.gov/prod/cen2010/briefs/c2010br-11.pdf.
US Census Bureau. (2012). State and country quick facts. Retrieved from http://quickfacts.census.gov/qfd/states/00000.html.
Venkatesh, K. G. (2008). Psychological stress and coping strategies of the parents of mentally challenged children. Journal of the Indian Academy of Applied Psychology, 34(2), 227–231.
Wong, S. Y., Wong, T. K., Martinson, I., Lai, A. C., Chen, W. J., & He, Y. S. (2004). Needs of Chinese parents of children with developmental disability. Journal of Learning Disabilities, 8(2), 141–158.
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Zechella, A.N., Raval, V.V. Parenting Children with Intellectual and Developmental Disabilities in Asian Indian Families in the United States. J Child Fam Stud 25, 1295–1309 (2016). https://doi.org/10.1007/s10826-015-0285-5
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DOI: https://doi.org/10.1007/s10826-015-0285-5