Conversation books for improving social interaction and social acceptance of children with complex communication needs in India
A participatory action research project
DOI:
https://doi.org/10.1558/jircd.21070Keywords:
complex communication needs, parent-child interaction, Applied Thematic Analysis, participatory action research, IndiaAbstract
Introduction: This study draws on data from a community-based participatory action research project conducted to develop and evaluate a communication partner training program for supporting parents of children with complex communication needs in South India.
Method: The article focuses on one participant with cerebral palsy and his mother. The participant child’s communicative participation and social interaction opportunities were enriched using a conversation book co-constructed by him, his mother, and the trainer-researcher speech-language pathologist during the training program. Data were collected throughout the action research project, including interviews, group meetings, observations, and a trainer-researcher journal.
Results and discussion: Applied thematic analysis was employed to analyze the longitudinal data, in order to highlight the changes in the participant child’s social interaction and communicative participation. By describing the process of developing the conversation book as a means of increasing communication and social interaction opportunities for the child, our data illustrate how personalized low-tech augmentative and alternative communication options can be a way to improve social participation for children with disabilities in culturally diverse and low resource contexts, where stigma toward disability provides significant obstacles to social inclusion.
References
Alur, M. (2008). The lethargy of a nation: Inclusive education in India and developing systemic strategies for change. In L. Barton and F. Armstrong (Eds.), Policy, experience and change: Cross-cultural reflections on inclusive education (pp. 91–106). Dordrecht and London: Springer. https://doi.org/10.1007/978-1-4020-5119-7_7
Balcazar, F. E., Keys, C. B., Kaplan, D. L., and Suarez-Balcazar, Y. (1998). Participatory action research and people with disabilities: Principles and challenges. Canadian Journal of Rehabilitation, 12(2), 105–112.
Barrett, H., and Marshall, J. (2013). Implementation of the World Report on Disability: Developing human resource capacity to meet the needs of people with communication disability in Uganda. International Journal of Speech-Language Pathology, 15(1), 48–52. https://doi.org/10.3109/17549507.2012.743035
Basil, C. (1992). Social interaction and learned helplessness in severely disabled children. Augmentative and Alternative Communication, 8(3), 188–199. https://doi.org/10.1080/07434619212331276183
Batorowicz, B., McDougall, S., and Shepherd, T. A. (2006). AAC and community partnerships: The participation path to community inclusion. Augmentative and Alternative Communication, 22(3), 178–195. https://doi.org/10.1080/07434610500468498
Baum, F., MacDougall, C., and Smith, D. (2006). Participatory action research. Journal of Epidemiology and Community Health, 60(10), 854–857. https://doi.org/10.1136/jech.2004.028662
Beukelman, D. R., and Light, J. C. (2020). Augmentative and alternative communication processes for children and adults with complex communication needs. In Augmentative and alternative communication: Supporting children and adults with complex communication needs (pp. 20–37). Baltimore: Paul H. Brookes Publishing. http://ebookcentral.pro-quest.com/lib/pensu/detail.action?docID=6229697
Blackstone, S., and Hunt-Berg, M. (2012). Social networks: A communication inventory for individuals with complex communication needs and their communication partners. Verona: Attainment Company. https://www.attainmentcompany.com/social-networks-package
Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development (pp. xvi, 184). Thousand Oaks and London: Sage Publications, Inc.
Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32(7), 513–531. https://doi.org/10.1037/0003-066X.32.7.513
Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22(6), 723–742. https://doi.org/10.1037/0012-1649.22.6.723
Bruner, J. S. (1983). Child’s talk: Learning to use language. New York: W. W. Norton.
Canlas, I. P., and Karpudewan, M. (2020). Blending the principles of participatory action research approach and elements of grounded theory in a disaster risk reduction education case study. International Journal of Qualitative Methods, 19, 1609406920958964. https://doi.org/10.1177/1609406920958964
Carter, M., and Maxwell, K. (1998). Promoting interaction with children using augmentative communication through a peer-directed intervention. International Journal of Disability, Development and Education, 45(1), 75–96. https://doi.org/10.1080/1034912980450106
Chen, H.-Y., and Boore, J. R. (2010). Translation and back-translation in qualitative nursing research: Methodological review. Journal of Clinical Nursing, 19(1–2), 234–239. https://doi.org/10.1111/j.1365-2702.2009.02896.x
Chennat, S. (2019). Disability studies: The context. In S. Chennat (Ed.), Disability inclusion and inclusive education (pp. 1–19). Singapore: Springer. https://doi.org/10.1007/978-981-15-0524-9_1
Cole, M. (2017). Putting culture in the middle. In H. Daniels (Ed.), An introduction to Vygotsky (pp. 74–96). London: Routledge. https://doi.org/10.4324/9781315647654-4
Dada, S., Bastable, K., Schlebusch, L., and Halder, S. (2020). The participation of children with intellectual disabilities: Including the voices of children and their caregivers in India and South Africa. International Journal of Environmental Research and Public Health, 17(18), 6706. https://doi.org/10.3390/ijerph17186706
Davies, K. E., Marshall, J., Brown, L. J., and Goldbart, J. (2017). Co-working: Parents’ conception of roles in supporting their children’s speech and language development. Child Language Teaching and Therapy, 33(2), 171–185. https://doi.org/10.1177/0265659016671169
Department of Empowerment of Persons with Disabilities (Divyangjan) (2018). Annual report 2017–18. disabilityaffairs.gov.in/.../5bd14e4020c5dAnnual%20Report%202017-18%20(E).pdf
DeVeney, S. L., Hagaman, J. L., and Bjornsen, A. L. (2017). Parent-implemented versus clinician-directed interventions for late-talking toddlers: A systematic review of the literature. Communication Disorders Quarterly, 39(1), 293–302. https://doi.org/10.1177/1525740117705116
Eadie, T. L., Yorkston, K. M., Klasner, E. R., Dudgeon, B. J., Deitz, J. C., …, and Amtmann, D. (2006). Measuring communicative participation: A review of self-report instruments in speech-language pathology. American Journal of Speech-Language Pathology, 15(4), 307–320. https://doi.org/10.1044/1058-0360(2006/030)
Gillette, Y. (2003). Achieving communication independence: A comprehensive guide to assessment and intervention. Thinking Publications.
Goldbart, J., and Sen, R. (2013). The World Report on Disability and communication disability: Some considerations from an Indian context. International Journal of Speech-Language Pathology, 15(1), 21–26. https://doi.org/10.3109/17549507.2012.727472
Gorman, J. C., and Balter, L. (1997). Culturally sensitive parent education: A critical review of quantitative research. Review of Educational Research, 67(3), 339–369. https://doi.org/10.2307/1170568
Guest, G., MacQueen, K. M., and Namey, E. E. (2012). Applied thematic analysis. Los Angeles: Sage. https://doi.org/10.4135/9781483384436
Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J., …, and Taylor, K. (2011). Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Developmental Medicine & Child Neurology, 53(8), 704–710. https://doi.org/10.1111/j.1469-8749.2011.03996.x
Johnson, J. M., Inglebret, E., Jones, C., and Ray, J. (2006). Perspectives of speech language pathologists regarding success versus abandonment of AAC. Augmentative and Alternative Communication, 22(2), 85–99. https://doi.org/10.1080/07434610500483588
Kaba, R., and Sooriakumaran, P. (2007). The evolution of the doctor–patient relationship. International Journal of Surgery, 5(1), 57–65. https://doi.org/10.1016/j.ijsu.2006.01.005
Kaniamattam, M., and Oxley, J. (2021a). Parenting individuals with intellectual and developmental disabilities in South India. Research in Developmental Disabilities, 111, 103888. https://doi.org/10.1016/j.ridd.2021.103888
Kaniamattam, M., and Oxley, J. (2021b). Unpacking the varied roles of mothers of children with developmental disabilities in South India. Disability & Society, 37(1), 38–62. https://doi.org/10.1080/09687599.2021.1918540
Kayama, M., Johnstone, C., and Limaye, S. (2021). The experiences of disability in socio-cultural contexts of India: Stigmatization and resilience. International Social Work, 64(4), 596–610. https://doi.org/10.1177/0020872819828781
Kemmis, S., McTaggart, R., and Nixon, R. (2014a). Doing critical participatory action research: The ‘planner’ part. In S. Kemmis, R. McTaggart, and R. Nixon (Eds.), The action research planner: Doing critical participatory action research (1st ed., pp. 85–114). Singapore: Springer. https://doi.org/10.1007/978-981-4560-67-2
Kemmis, S., McTaggart, R., and Nixon, R. (2014b). Introducing critical participatory action research. In S. Kemmis, R. McTaggart, and R. Nixon (Eds.), The action research planner: Doing critical participatory action research (pp. 1–31). Singapore: Springer. https://doi.org/10.1007/978-981-4560-67-2_1
Kent-Walsh, J., and Mcnaughton, D. (2005). Communication partner instruction in AAC: Present practices and future directions. Augmentative and Alternative Communication, 21(3), 195–204. https://doi.org/10.1080/07434610400006646
KidsAbilityTM (2015). Developing and using conversation books. KidsAbilityTM Centre for Child Development, Augmentative Communication Services (ACS). https://www.kidsability.ca/uploads/Augmentative%20Communication%20Services%20(ACS)/Workshops/3Developing%20and%20Using%20Conversation%20Books%20accompanying%20booklet2015.pdf
King, G., Lawm, M., King, S., Rosenbaum, P., Kertoy, M. K., and Young, N. L. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical and Occupational Therapy in Pediatrics, 23(1), 63–90. https://doi.org/10.1080/J006v23n01_05
Klatte, I. S., Lyons, R., Davies, K., Harding, S., Marshall, J., McKean, C., and Roulstone, S. (2020). Collaboration between parents and SLTs produces optimal outcomes for children attending speech and language therapy: Gathering the evidence. International Journal of Language and Communication Disorders, 1460-6984.12538. https://doi.org/10.1111/1460-6984.12538
Kleeck, A. van. (1994). Potential cultural bias in training parents as conversational partners with their children who have delays in language development. American Journal of Speech-Language Pathology, 3(1), 67–78. https://doi.org/10.1044/1058-0360.0301.67
Kumar, S. G., Roy, G., and Kar, S. S. (2012). Disability and rehabilitation services in India: Issues and challenges. Journal of Family Medicine and Primary Care, 1(1), 69–73. https://doi.org/10.4103/2249-4863.94458
Kummerer, S. E. (2012). Promising strategies for collaborating with Hispanic parents during family-centered speech-language intervention. Communication Disorders Quarterly, 33(2), 84–95. https://doi.org/10.1177/1525740109358453
Lawson, H. A. (2015). Introducing participatory action research. In H. A. Lawson, J. C. Caringi, L. Pyles, J. M. Jurkowski, and C. T. Bozlak (Eds.), Participatory action research (pp. 1–34). http://site.ebrary.com/id/10992256
Light, J., and McNaughton, D. (2014). Communicative competence for individuals who require augmentative and alternative communication: A new definition for a new era of communication? Augmentative and Alternative Communication, 30(1), 1–18. https://doi.org/10.3109/07434618.2014.885080
Light, J., Collier, B., and Parnes, P. (1985). Communicative interaction between young non-speaking physically disabled children and their primary caregivers: Part II – communicative function. Augmentative and Alternative Communication, 1(3), 98–107. https://doi.org/10.1080/07434618512331273591
Loewenson, R., Laurell, A., Hogstedt, C., D’Ambruoso, L., and Shroff, Z. (2014). Participatory action research in health systems: A methods reader. TARSC, AHPSR, WHO, IDRC Canada, EQUINET Harare. https://equinetafrica.org/sites/default/files/uploads/documents/PAR_Methods_Reader2014_for_web.pdf
Marsiglia, F. F., and Booth, J. M. (2015). Cultural adaptation of interventions in real practice settings. Research on Social Work Practice, 25(4), 423–432. https://doi.org/10.1177/1049731514535989
McIntyre, A. (2008). Participatory action research. In Participatory action research (pp. 1–14). Los Angeles: Sage. https://doi.org/10.4135/9781483385679
Miller, C. (1998). Supporting practitioner research in speech and language therapy. International Journal of Language and Communication Disorders, 33(S1), 26–30. https://doi.org/10.3109/13682829809179390
Mirenda, P. (2014). Revisiting the mosaic of supports required for including people with severe intellectual or developmental disabilities in their communities. Augmentative and Alternative Communication, 30(1), 19–27. https://doi.org/10.3109/07434618.2013.875590
Muttiah, N. A., McNaughton, D., and Drager, K. D. R. (2016). Providing instructional support for AAC service delivery in low-and middle-income (LAMI) countries. International Journal of Speech-Language Pathology, 18(4), 341–353. https://doi.org/10.3109/17549507.2015.1101154
Nelson, K. (2007). Modern metaphors of the developing child. In Young minds in social worlds: Experience, meaning, and memory (pp. 1–28). Cambridge: Harvard University Press. https://doi.org/10.4159/9780674041400
O’Keefe, P. B. (2007). People with disabilities in India: From commitments to out-comes. Washington, D.C.: World Bank. http://documents.worldbank.org/curated/en/358151468268839622/People-with-disabilities-in-India-from-commitments-to-outcomes
Ozanne, J. L., and Saatcioglu, B. (2008). Participatory action research. Journal of Consumer Research, 35(3), 423–439. https://doi.org/10.1086/586911
Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., and Galuppi, B. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine & Child Neurology, 39(4), 214–223. https://doi.org/10.1111/j.1469-8749.1997.tb07414.x
Potvin, L., Bisset, S. L., and Walz, L. (2013). Participatory action research: Theoretical perspectives on the challenges of researching action. In I. L. Bourgeault, R. Dingwall, and R. G. De Vries (Eds.), The SAGE handbook of qualitative methods in health research (paperback ed., pp. 433–453). London: SAGE. https://doi.org/10.4135/9781446268247.n23
Raghavendra, P., Bornman, J., Granlund, M., and Björck-Åkesson, E. (2007). The World Health Organization’s international classification of functioning, disability and health: Implications for clinical and research practice in the field of augmentative and alternative communication. Augmentative and Alternative Communication, 23(4), 349–361. https://doi.org/10.1080/07434610701650928
Raghavendra, P., Virgo, R., Olsson, C., Connell, T., and Lane, A. E. (2011). Activity participation of children with complex communication needs, physical disabilities and typically-developing peers. Developmental Neurorehabilitation, 14(3), 145–155. https://doi.org/10.3109/17518423.2011.568994
Roberts, M. Y., and Kaiser, A. P. (2011). The effectiveness of parent-implemented language interventions: A meta-analysis. American Journal of Speech-Language Pathology, 20(3), 180–199. https://doi.org/10.1044/1058-0360(2011/10-0055)
Rogoff, B. (2003). The cultural nature of human development. Oxford and New York: Oxford University Press.
Rogoff, B., Mistry, J., Göncü, A., Mosier, C., Chavajay, P., …, and Goncu, A. (1993). Guided participation in cultural activity by toddlers and caregivers. Monographs of the Society for Research in Child Development, 58(8), i. https://doi.org/10.2307/1166109
Seekins, T., and White, G. W. (2013). Participatory action research designs in applied disability and rehabilitation science: Protecting against threats to social validity. Archives of Physical Medicine and Rehabilitation, 94(1), S20–S29. https://doi.org/10.1016/j.apmr.2012.07.033
Stoiber, K. C., Purdy, S., and Klingbeil, D. A. (2016). Evidence-based practices. In N. N. Singh (Ed.), Handbook of evidence-based practices in intellectual and developmental disabilities (pp. 41–68). Cham: Springer International Publishing. https://doi.org/10.1007/978-3-319-26583-4_3
United Nations. (2006). UN Convention on the Rights of Persons with Disabilities (CRPD). https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
United Nations (Ed.) (2014). The Convention on the Rights of Persons with Disabilities: Training guide. United Nations.
Vygotsky, L. S. (1978). Interaction between learning and development. In M. Cole, V. John-Steiner, S. Scribner, and E. Souberman (Eds.), Mind in society: The development of higher psychological processes (pp. 79–91). Cambridge: Harvard University Press.
Westby, C. (2009). Considerations in working successfully with culturally/linguistically diverse families in assessment and intervention of communication disorders. Seminars in Speech and Language, 30(04), 279–289. https://doi.org/10.1055/s-0029-1241725
Wetherby, A. M., and Prizant, B. M. (2002). CSBS DP manual: Communication and symbolic behavior scales: developmental profile (1st normed ed). Baltimore: Paul H. Brookes Publishing. https://doi.org/10.1037/t11529-000
Woods, J. J., Jeanne, W. M., Mollie, F., and Trudi, M. (2011). Collaborative consultation in natural environments: Strategies to enhance family-centered supports and services. Language, Speech, and Hearing Services in Schools, 42(3), 379–392. https://doi.org/10.1044/0161-1461(2011/10-0016)
World Health Organization (2007). International classification of functioning, disability, and health: Children and youth version: ICF-CY. Genev: World Health Organization.
World Health Organization (2011). World report on disability. Geneva: World Health Organization. https://www.who.int/teams/noncommunicable-diseases/disability-and-rehabilitation/world-report-on-disability
World Health Organization (2019). Rehabilitation in health systems: Guide for action. https://www.who.int/publications/i/item/rehabilitation-in-health-systems-guide-for-action