Unpacking the varied roles of mothers of children with developmental disabilities in South India

References

• Alur, Mithu. 2008. “The Lethargy of a Nation: Inclusive Education in India and Developing Systemic Strategies for Change.” In Policy, Experience and Change: Cross-Cultural Reflections on Inclusive Education, edited by L. Barton and F. Armstrrong, 91–106. Dordrecht: SpringerNetherlands. doi:10.1007/978-1-4020-5119-7_7.
   Google Scholar
• American Speech-Language-Hearing Association. 2008. Roles and Responsibilities of Speech-Language Pathologists in Early Intervention: Position Statement. PS2008-00291. Rockville, MD: American Speech-Language-Hearing Association. doi:10.1044/policy.PS2008-00291.
   Google Scholar
• Baptiste, David A. 2005. “Family Therapy with East Indian Immigrant Parents Rearing Children in the United States: Parental Concerns, Therapeutic Issues, and Recommendations.” Contemporary Family Therapy 27 (3): 345–66. doi:10.1007/s10591-005-6214-9.
   Web of Science ®Google Scholar
• Barua, Merry, Bharti, and Shubhangi Vaidya. 2019. “Inclusive Education for Children with Autism: Issues and Strategies.” In Disability Inclusion and Inclusive Education, edited by Sailaja Chennat, 83–108. Singapore: Springer Singapore. doi:10.1007/978-981-15-0524-9_5.
   Google Scholar
• Bazyk, S. 1989. “Changes in Attitudes and Beliefs Regarding Parent Participation and Home Programs: An Update.” American Journal of Occupational Therapy 43 (11): 723–728. doi:10.5014/ajot.43.11.723.
   Google Scholar
• Biddle, Bruce Jesse. 1979. Role Theory: Expectations, Identities, and Behaviors. New York: Academic Press.
   Google Scholar
• Biddle, Bruce Jesse. 1986. “Recent Developments in Role Theory.” Annual Review of Sociology 12 (1): 67–92. doi:10.1146/annurev.so.12.080186.000435.
   Web of Science ®Google Scholar
• Bornstein, Marc H. 2012. “Cultural Approaches to Parenting. Parenting, Science and Practice 12 (2–3): 212–21. doi:10.1080/15295192.2012.683359.
   PubMed Web of Science ®Google Scholar
• Bornstein, Marc H., and Jennifer E. Lansford. 2010. “Parenting.” In Handbook of Cultural Developmental Science, edited by Marc H. Bornstein, 1st ed., 259–77. New York: Psychology Press.
   Google Scholar
• Brezis, Rachel S., Thomas S. Weisner, Tamara C. Daley, Nidhi Singhal, Merry Barua, and Shreya P. Chollera. 2015. “Parenting a Child with Autism in India: Narratives before and after a Parent–Child Intervention Program.” Culture, Medicine, and Psychiatry 39 (2): 277–98. doi:10.1007/s11013-015-9434-y.
   PubMed Web of Science ®Google Scholar
• Carroll, Clare. 2010. “‘It’s Not Everyday That Parents Get a Chance to Talk like This’: Exploring Parents’ Perceptions and Expectations of Speech-Language Pathology Services for Children with Intellectual Disability.” International Journal of Speech-Language Pathology 12 (4): 352–61. doi:10.3109/17549500903312107.
   PubMed Web of Science ®Google Scholar
• Chen, Hsiao-Yu, and Jennifer R. Boore. 2010. “Translation and Back-Translation in Qualitative Nursing Research.” Journal of Clinical Nursing 19 (1–2): 234–39. doi:10.1111/j.1365-2702.2009.02896.x.
   PubMed Web of Science ®Google Scholar
• Chennat, Sailaja. 2019. “Disability Studies: The Context.” In Disability Inclusion and Inclusive Education, edited by Sailaja Chennat, 1–19. Singapore: Springer Singapore. doi:10.1007/978-981-15-0524-9_1.
   Google Scholar
• Committee on Supporting the Parents of Young Children, Board on Children, Youth, and Families, Division of Behavioral and Social Sciences and Education, and National Academies of Sciences, Engineering, and Medicine. 2016. Parenting Matters: Supporting Parents of Children Ages 0–8. Edited by Vivian L. Gadsden, Morgan Ford, and Heather Breiner. Washington, DC: National Academies Press. doi:10.17226/21868.
   Google Scholar
• Creary, Stephanie J., and Judith R. Gordon. 2016. “Role Conflict, Role Overload, and Role Strain.” In Encyclopedia of Family Studies, edited by Constance L. Shehan, 1–6. Hoboken, NJ: John Wiley & Sons, Inc. doi:10.1002/9781119085621.wbefs012.
   Google Scholar
• Crowe, T. K., B. VanLeit, K. K. Berghmans, and P. Mann. 1997. “Role Perceptions of Mothers with Young Children: The Impact of a Child’s Disability.” American Journal of Occupational Therapy 51 (8): 651–61. doi:10.5014/ajot.51.8.651.
   PubMed Web of Science ®Google Scholar
• Curtin, Michael, and Ellie Fossey. 2007. “Appraising the Trustworthiness of Qualitative Studies: Guidelines for Occupational Therapists.” Australian Occupational Therapy Journal 54 (2): 88–94. doi:10.1111/j.1440-1630.2007.00661.x.
   Web of Science ®Google Scholar
• Davies, Karen E, Julie Marshall, Laura JE Brown, and Juliet Goldbart. 2017. “Co-Working: Parents’ Conception of Roles in Supporting Their Children’s Speech and Language Development.” Child Language Teaching and Therapy 33 (2): 171–85. doi:10.1177/0265659016671169.
   Web of Science ®Google Scholar
• DeLoache, Judy S., and Alma Gottlieb, eds. 2000. A World of Babies: Imagined Childcare Guides for Seven Societies. 1st ed. Cambridge: Cambridge University Press. doi:10.1017/CBO9780511818004.
   Google Scholar
• Department of Empowerment of Persons with Disabilities (Divyangjan). 2018. Annual Report 2017–18. disabilityaffairs.gov.in/…/5bd14e4020c5dAnnual%20Report%202017- 18%20(E).pdf.
   Google Scholar
• DeVeney, Shari L., Jessica L. Hagaman, and Abby L. Bjornsen. 2017. “Parent-Implemented versus Clinician-Directed Interventions for Late-Talking Toddlers: A Systematic Review of the Literature.” Communication Disorders Quarterly 39 (1): 293–302. doi:10.1177/1525740117705116.
   Web of Science ®Google Scholar
• Division for Early Childhood. 2014. “DEC Recommended Practices in Early Intervention/Early Childhood Special Education 2014.” http://www.dec-sped.org/recommendedpractices.
   Google Scholar
• Dockrell, Julie, Jessie Ricketts, and Geoff Lindsay. 2012. Understanding Speech, Language and Communication Needs: Profiles of Need and Provision (2012). London: Department for Education. https://wwwgovuk/government/uploads/system/upleads/attachment data/file/219630/DFE—RR247—BCRP4pdf.
   Google Scholar
• Dunst, Carl J., and Carol M. Trivette. 1987. “Enabling and Empowering Families: Conceptual and Intervention Issues.” School Psychology Review 16 (4): 443–56. doi:10.1080/02796015.1987.12085307.
   Web of Science ®Google Scholar
• Eagly, Alice H., and Wendy Wood. 2012. “Social Role Theory.” In Handbook of Theories of Social Psychology, edited by Paul Van Lange, Arie Kruglanski, and E. Higgins, 458–76. London: SAGE Publications Ltd. doi:10.4135/9781446249222.n49.
   Google Scholar
• Edwardraj, S., K. Mumtaj, J. H. Prasad, A. Kuruvilla, and K. S. Jacob. 2010. “Perceptions about Intellectual Disability: A Qualitative Study from Vellore, South India: Perceptions about Intellectual Disability.” Journal of Intellectual Disability Research: JIDR 54 (8): 736–48. doi:10.1111/j.1365-2788.2010.01301.x.
   PubMedGoogle Scholar
• Ganjiwale, Deepak, Jaishree Ganjiwale, Bharti Sharma, and Brajesh Mishra. 2016. “Quality of Life and Coping Strategies of Caregivers of Children with Physical and Mental Disabilities.” Journal of Family Medicine and Primary Care 5 (2): 343. doi:10.4103/2249-4863.192360.
   PubMedGoogle Scholar
• Gershoff, Elizabeth T., Andrew Grogan-Kaylor, Jennifer E. Lansford, Lei Chang, Arnaldo Zelli, Kirby Deater-Deckard, and Kenneth A. Dodge. 2010. “Parent Discipline Practices in an International Sample: Associations with Child Behaviors and Moderation by Perceived Normativeness.” Child Development 81 (2): 487–502. doi:10.1111/j.1467-8624.2009.01409.x.
   PubMed Web of Science ®Google Scholar
• Glogowska, Margaret, and Rona Campbell. 2000. “Investigating Parental Views of Involvement in Pre-School Speech and Language Therapy.” International Journal of Language & Communication Disorders 35 (3): 391–405. doi:10.1080/136828200410645.
   PubMed Web of Science ®Google Scholar
• Goode, William J. 1960. “A Theory of Role Strain.” American Sociological Review 25 (4): 483. doi:10.2307/2092933.
   Web of Science ®Google Scholar
• Guest, Greg, Kathleen M. MacQueen, and Emily E. Namey. 2012. Applied Thematic Analysis. Los Angeles, CA: Sage.
   Google Scholar
• Gupta, Ashum, and Nidhi Singhal. 2004. “Positive Perceptions in Parents of Children with Disabilities.” Asia Pacific Disability Rehabilitation Journal 15 (1): 22–35. https://www.researchgate.net/publication/228983336_Positive_perceptions_in_parents_of_children_with_disabilities.
   Google Scholar
• Harry, Beth. 1992. “Restructuring the Participation of African-American Parents in Special Education.” Exceptional Children 59 (2): 123–31. doi:10.1177/001440299205900205.
   Web of Science ®Google Scholar
• Harry, Beth, Robert Rueda, and Maya Kalyanpur. 1999. “Cultural Reciprocity in Sociocultural Perspective: Adapting the Normalization Principle for Family Collaboration.” Exceptional Children 66 (1): 123–36. doi:10.1177/001440299906600108.
   Web of Science ®Google Scholar
• Hauenstein, Emily J. 1990. “The Experience of Distress in Parents of Chronically Ill Children: Potential or Likely Outcome?” Journal of Clinical Child Psychology 19 (4): 356–64. doi:10.1207/s15374424jccp1904_7.
   Web of Science ®Google Scholar
• Heer, Kuljit, John Rose, Michael Larkin, and Nidhi Singhal. 2015. “The Experiences of Mothers Caring for a Child with Developmental Disabilities: A Cross Cultural Perspective.” International Journal of Human Rights in Healthcare 8 (4): 218–32. doi:10.1108/IJHRH-06-2014-0011.
   Google Scholar
• Hehir, T., T. Gridal, B. Freeman, R. Lamoreau, Y. Borquaye, and S. Burke. 2016. A Summary of the Evidence on Inclusive Education. Sao Paulo: Instituto Alana. https://alana.org.br/wp-content/uploads/2016/12/A_Summary_of_the_evidence_on_inclusive_education.pdf.
   Google Scholar
• Hirsch, Barton J., and Bruce D. Rapkin. 1986. “Multiple Roles, Social Networks, and Women’s Well-Being.” Journal of Personality and Social Psychology 51 (6): 1237–47. doi:10.1037/0022-3514.51.6.1237.
   PubMed Web of Science ®Google Scholar
• Hunter, W. M., D. Jain, L. S. Sadowski, and A. I. Sanhueza. 2000. “Risk Factors for Severe Child Discipline Practices in Rural India.” Journal of Pediatric Psychology 25 (6): 435–47. doi:10.1093/jpepsy/25.6.435.
   PubMed Web of Science ®Google Scholar
• Julie, Marshall, and Juliet Goldbart. 2008. “‘Communication is Everything I Think.’ Parenting a Child Who Needs Augmentative and Alternative Communication (AAC).” International Journal of Language & Communication Disorders 43 (1): 77–98. doi:10.1080/13682820701267444.
   PubMed Web of Science ®Google Scholar
• Julie, Marshall, Juliet Goldbart, and Julie Phillips. 2007. “Parents’ and Speech and Language Therapists’ Explanatory Models of Language Development, Language Delay and Intervention.” International Journal of Language & Communication Disorders 42 (5): 533–55. doi:10.1080/13682820601053753.
   PubMed Web of Science ®Google Scholar
• Kalyanpur, Maya, and I. P. Gowramma. 2007. “Cultural Barriers to South Indian Families’ Access to Services and Educational Goals for Their Children with Disabilities.” Journal of the International Association of Special Education 8 (1): 69–82. https://www.iase.org/Publications/JIASE%202007.pdf#page=71.
   Google Scholar
• Kalyanpur, Maya. 1996. “The Influence of Western Special Education on Community-Based Services in India.” Disability & Society 11 (2): 249–70. doi:10.1080/09687599650023263.
   Web of Science ®Google Scholar
• Kaniamattam, Monica and Judith D. Oxley. 2021. “Parenting Individuals with Intellectual and Developmental Disabilities in South India.” Research in Developmental Disabilities 111: 103888. doi:10.1016/j.ridd.2021.103888.
   PubMed Web of Science ®Google Scholar
• Kaniamattam, Monica. 2018. “Communication Partner Training for Parents of Children with Communication Disorders: A Participatory Action Research Study.” Unpublished diss., University of Louisiana at Lafayette. https://search.proquest.com/openview/880e20ce8ca5e194313ed7bd82b1305e/1?pq-origsite=gscholar&cbl=18750&diss=y.
   Google Scholar
• Keown, Louise J., Nike Franke, and Ripi Kaur. 2018. “The Role of Fathers in Supporting Children’s Development.” In Handbook of Parenting and Child Development across the Lifespan, edited by Matthew R. Sanders and Alina Morawska, 121–142. Cham: Springer International Publishing. doi:10.1007/978-3-319-94598-9_6.
   Google Scholar
• Ladkin, Donna. 2004. “Action Research.” In Qualitative Research Practice, edited by Clive Seale, Giampietro Gobo, Jaber Gubrium, and David Silverman, 478–90. London: SAGE Publications Ltd. doi:10.4135/9781848608191.d39.
   Google Scholar
• Lansford, Jennifer E., Lei Chang, Kenneth A. Dodge, Patrick S. Malone, Paul Oburu, Kerstin Palmérus, Dario Bacchini, et al. 2005. “Physical Discipline and Children’s Adjustment: Cultural Normativeness as a Moderator.” Child Development 76 (6): 1234–1246. doi:10.1111/j.1467-8624.2005.00847.x.
   Google Scholar
• Major, Debra A. 2003. “Utilizing Role Theory to Help Employed Parents Cope with Children’s Chronic Illness.” Health Education Research 18 (1): 45–57. doi:10.1093/her/18.1.45.
   PubMed Web of Science ®Google Scholar
• Mowder, Barbara A. 2005. “Parent Development Theory: Understanding Parents, Parenting Perceptions and Parenting Behaviors.” Journal of Early Childhood and Infant Psychology 1: 45–65.
   Google Scholar
• Mpofu, Elias, Julie Chronister, Ebonee T. Johnson, and Geoff Denham. 2012. “Aspects of Culture Influencing Rehabilitation and Persons with Disabilities.” In P. Kennedy (Ed.), The Oxford Handbook of Rehabilitation Psychology. (pp. 543–553). Oxford, UK: Oxford University Press. doi:10.1093/oxfordhb/9780199733989.013.0030. 
   Google Scholar
• Narayan, Jayanthi. 2019. “Empowering Persons with Intellectual Disability.” In Disability Inclusion and Inclusive Education, edited by Sailaja Chennat, 63–82. Singapore: Springer Singapore. doi:10.1007/978-981-15-0524-9_4.
   Google Scholar
• National Early Childhood Technical Assistance Center. 2008. “Workgroup on Principles and Practices in Natural Environments. Agreed upon Practices for Providing Early Intervention Services in Natural Environments. OSEP TA Community of Practice-Part C Settings.” http://www.ectacenter.org/∼pdfs/topics/families/Principles_LooksLike_DoesntLookLike3_11_08.pdf.
   Google Scholar
• O’Keefe, Philip. 2007. People with Disabilities in India: From Commitments to Outcomes. Washington, DC: World Bank Group. http://documents.worldbank.org/curated/en/358151468268839622/People-with-disabilities-in-India-from-commitments-to-outcomes.
   Google Scholar
• Odom, Samuel L., and Lynette Chandler. 1990. “Transition to Parenthood for Parents of Technology-Assisted Infants.” Topics in Early Childhood Special Education 9 (4): 43–54. doi:10.1177/027112149000900405.
   Web of Science ®Google Scholar
• Olusanya, Bolajoko O., Adrian C. Davis, Donald Wertlieb, Nem-Yun Boo, M. K. C. Nair, Ricardo Halpern, Hannah Kuper, Cecilia Breinbauer, Petrus J. de Vries, Melissa Gladstone, and Neal Halfon. 2018. “Developmental Disabilities among Children Younger than 5 Years in 195 Countries and Territories, 1990–2016: A Systematic Analysis for the Global Burden of Disease Study 2016.” The Lancet Global Health 6 (10): e1100–e1121. doi:10.1016/S2214-109X(18)30309-7.
   PubMed Web of Science ®Google Scholar
• Opp, Gü Unther, and Martin Thurmair. 1993. “Early Intervention for Children with Developmental Delays and Children with Disabilities: The Bavarian Concept.” Topics in Early Childhood Special Education 13 (4): 488–507. doi:10.1177/027112149301300410.
   Web of Science ®Google Scholar
• Pal, D. K., G. Chaudhury, T. Das, and S. Sengupta. 2002. “Predictors of Parental Adjustment to Children’s Epilepsy in Rural India.” Child: Care, Health and Development 28 (4): 295–300. doi:10.1046/j.1365-2214.2002.00278.x.
   PubMed Web of Science ®Google Scholar
• Purohit, Bhaskar, and Tathagata Bandyopadhyay. 2014. “Beyond Job Security and Money: Driving Factors of Motivation for Government Doctors in India.” Human Resources for Health 12 (1): 12. doi:10.1186/1478-4491-12-12.
   PubMedGoogle Scholar
• Rogoff, Barbara, Christine Mosier, Jayanthi Mistry, and Artin Göncü. 1989. “Toddlers’ Guided Participation in Cultural Activity.” Cultural Dynamics 2 (2): 209–37. doi:10.1177/092137408900200205.
   Google Scholar
• Rogoff, Barbara. 2003. The Cultural Nature of Human Development. Oxford: Oxford University Press.
   Google Scholar
• Rosenthal, Miriam K., and Dorit Roer-Strier. 2001. “Cultural Differences in Mothers’ Developmental Goals and Ethnotheories.” International Journal of Psychology 36 (1): 20–31. doi:10.1080/00207590042000029.
   Web of Science ®Google Scholar
• Runswick-Cole, Katherine. 2008. “Between a Rock and a Hard Place: Parents’ Attitudes to the Inclusion of Children with Special Educational Needs in Mainstream and Special Schools.” British Journal of Special Education 35 (3): 173–80. doi:10.1111/j.1467-8578.2008.00390.x.
   Google Scholar
• Scherzer, Alfred L., Meera Chhagan, Shuaib Kauchali, and Ezra Susser. 2012. “Global Perspective on Early Diagnosis and Intervention for Children with Developmental Delays and Disabilities: Review.” Developmental Medicine & Child Neurology 54 (12): 1079–84. doi:10.1111/j.1469-8749.2012.04348.x.
   PubMed Web of Science ®Google Scholar
• Sharma, Gunjan. 2019. “East versus West: The Great Divide.” BJPsych International 16 (1): 22–23. doi:10.1192/bji.2018.13.
   PubMedGoogle Scholar
• Smythe, Tracey, Maria Zuurmond, Cally J Tann, Melissa Gladstone, and Hannah Kuper. 2020. “Early Intervention for Children with Developmental Disabilities in Low and Middle-Income Countries – the Case for Action.” International Health 13: 222–231. doi:10.1093/inthealth/ihaa044.
   Web of Science ®Google Scholar
• Sperling, Shoshana, and Barbara A. Mowder. 2006. “Parenting Perceptions: Comparing Parents of Typical and Special Needs Preschoolers.” Psychology in the Schools 43 (6): 695–700. doi:10.1002/pits.20180.
   Web of Science ®Google Scholar
• Stephan, Toby, and Kevin Manning. 2017. “Parent-Implemented Early Language Intervention: What Really Works?” http://www.hanen.org/SiteAssets/Helpful-Info/Whitepapers/parent-implemented-early-language-intervention-wha.pdf
   Google Scholar
• Tomlinson, M., M. T. Yasamy, E. Emerson, A. Officer, D. Richler, and S. Saxena. 2014. “Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism: Setting Research Priorities for Developmental Disabilities.” Journal of Intellectual Disability Research 58 (12): 1121–30. doi:10.1111/jir.12106.
   PubMed Web of Science ®Google Scholar
• UNESCO Institute for Statistics/UNICEF. 2015. Fixing the Broken Promise of Education for All: Findings from the Global Initiative on Out-of-School Children. UNESCO Institute for Statistics. doi:10.15220/978-92-9189-161-0-en.
   Google Scholar
• United Nations. 2019. Disability and Development Report: Realizing the Sustainable Development Goals by, for and with Persons with Disabilities: 2018. New York: United Nations.
   Google Scholar
• Verdon, Sarah, Sandie Wong, and Sharynne McLeod. 2016. “Shared Knowledge and Mutual Respect: Enhancing Culturally Competent Practice through Collaboration with Families and Communities.” Child Language Teaching and Therapy 32 (2): 205–21. doi:10.1177/0265659015620254.
   Web of Science ®Google Scholar
• World Health Organization. 2011. World Report on Disability. Geneva, Switzerland: World Health Organization. https://www.who.int/teams/noncommunicable-diseases/disability-and-rehabilitation/world-report-on-disability.
   Google Scholar