Abstract
With the increasing recognition that the voices of children need to be included in matters that affect their lives, this scoping review aimed to investigate the methods that have been used in qualitative studies to support the participation of children with neurodevelopmental disorders in research. Studies were identified through a systematic scoping review of literature published between January 2009 and June 2019 in a number of databases; SCOPUS, Embase, PsycINFO, Applied social science index and abstract (ASSIA) and ERIC. Forty-one studies were assessed using the eligibility criteria. Nineteen studies were included following evaluation and results synthesised using the PRISMA guidelines. This review shares how the 19 studies consider space, voice and audience as concepts of participation. Some studies clearly augmented verbal conversations with other methods to elicit the child’s voice. The expertise of the researcher appears fundamental to their capacity for innovation, their style and flexibility of interviewing and their capacity and willingness towards adaptation of the research tools as the research process unfolds. Finding ways to circumvent children’s difficulties with communication and expression must be innovative.
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References
Abeywickrama, S. P., Jayasinghe, I. K., & Sumanasena, S. P. (2013). Excluded in inclusive schools: experiences of children with disabilities, their families and teachers in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 24, 115–129. https://doi.org/10.5463/dcid.v24i1.172.
Arksey, H., & O'Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616.
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. https://doi.org/10.1111/j.1468-3148.1997.tb00020.x.
Bedoin, D., & Scelles, R. (2015). Qualitative research interviews of children with communication disorders: methodological implications. European Journal of Special Needs Education, 30, 474–489.
Beresford, B., Tozer, R., Rabiee, P., & Sloper, P. (2004). Developing an approach to involving children with autistic spectrum disorders in a social care research project. British Journal of Learning Disabilities, 32, 180–185. https://doi.org/10.1111/j.1468-3156.2004.00318.x.
Carman, S. N., & Chapparo, C. J. (2012). Children who experience difficulties with learning: mother and child perceptions of social competence. Australian Occupational Therapy Journal, 59, 339–346. https://doi.org/10.1111/j.1440-1630.2012.01034.x.
Carroll, C., & Sixsmith, J. (2016). Exploring the facilitation of young children with disabilities in research about their early intervention service. Child Language Teaching and Therapy, 32(3), 313–325. https://doi.org/10.1177/0265659016638394.
Connors, C., & Stalker, K. (2007). Children's experiences of disability: pointers to a social model of childhood disability. Disability & Society, 22, 19–33. https://doi.org/10.1080/09687590601056162.
Cooke, A., Smith, D., & Booth, A. (2012). Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22, 1435–1443. https://doi.org/10.1177/1049732312452938.
Creswell, J. W. (2007). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks: Sage.
Critical Appraisal Skills Programme. (2018). CASP qualitative checklist [Online]. https://casp-uk.net/casp-tools-checklists/.
Department Of Children And Youth Affairs (2015). National Strategy on Children and Young People’s Participation in Decision-making, 2015–2020. Government Publications. Retreived from http://dcya.gov.ie/documents/playandrec/20150617NatStratParticipationReport.pdf.
DePape, A., & Lindsay, S. (2016). Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 31, 60–71.
Egilson, S. T., & Traustadottir, R. (2009). Assistance to pupils with physical disabilities in regular schools: promoting inclusion or creating dependency? European Journal of Special Needs Education, 24, 21–36. https://doi.org/10.1080/08856250802596766.
Fayette, R., & Bond, C. (2018). A systematic literature review of qualitative research methods for eliciting the views of young people with ASD about their educational experiences. European Journal of Special Needs Education, 33, 349–365. https://doi.org/10.1080/08856257.2017.1314111.
Franklin, A., & Sloper, P. (2009). Supporting the participation of disabled children and young people in decision-making. Children and Society, 23, 3–15.
Gray, C., & Winter, E. (2011). Hearing voices: participatory research with preschool children with and without disabilities. European Early Childhood Education Research Journal, 19, 309–320. https://doi.org/10.1080/1350293X.2011.597963.
Guardino, C., Hall, K. W., Largo-Wight, E., & Hubbuch, C. (2019). Teacher and student perceptions of an outdoor classroom. Journal of Outdoor and Environmental Education, 22, 113–126. https://doi.org/10.1007/s42322-019-00033-7.
Haegele, J. A., & Sutherland, S. (2015). Perspectives of students with disabilities toward physical education: a qualitative inquiry review. Quest, 67, 255–273. https://doi.org/10.1080/00336297.2015.1050118.
Hanline, M. F. & Correa-Torres, S. M. (2012). Experiences of preschoolers with severe disabilities in an inclusive early education setting: a qualitative study. Education and Training in Autism and Developmental Disabilities, 47, 109–121. Retrieved from: http://www.jstor.org/stable/23880566
Harding, J., Harding, K., Jamieson, P., Mullally, M., Politi, C., Wong-Sing, E., Law, M., & Petrenchik, T. M. (2009). Children with disabilities’ perceptions of activity participation and environments: a pilot study. Canadian Journal of Occupational Therapy, 76, 133–144. https://doi.org/10.1177/000841740907600302.
Harvey, W., Wilkinson, S., Pressé, C., Joober, R., & Grizenko, N. (2014). Children say the darndest things: physical activity and children with attention-deficit hyperactivity disorder. Physical Education and Sport Pedagogy, 19, 205–220. https://doi.org/10.1080/17408989.2012.754000.
Healy, S., Msetfi, R., & Gallagher, S. (2013). Happy and a bit nervous: the experiences of children with autism in physical education. British Journal of Learning Disabilities, 41, 222–228. https://doi.org/10.1111/bld.12053.
Kelly, B. (2007). Methodological Issues for Qualitative Research with Learning Disabled Children. International Journal of Social Research Methodology, 10, 21–35.
Kirby, A. V., Dickie, V. A., & Baranek, G. T. (2015). Sensory experiences of children with autism spectrum disorder: in their own words. Autism, 19, 316–326. https://doi.org/10.1177/1362361314520756.
Lan, Y. J., Hsiao, I. Y. T., & Shih, M. F. (2018). Effective learning design of game-based 3D virtual language learning environments for special education students. Educational Technology and Society, 21, 213–227.
Lewis, A. (2010). Silence in the context of ‘child voice’. Children & Society, 24, 14–23. https://doi.org/10.1111/j.1099-0860.2008.00200.x.
Lewis, A., & Porter, J. (2004). Interviewing children and young people with learning disabilities: guidelines for researchers and multi-professional practice. British Journal of Learning Disabilities, 32, 191–197. https://doi.org/10.1111/j.1468-3156.2004.00313.x.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage: Beverly Hills.
Lundy, L. (2007). ‘Voice’ is not enough: conceptualising Article 12 of the United Nations Convention on the Rights of the Child. British Educational Research Journal, 33, 927–942.
Merrick, R., & Roulstone, S. (2011). Children’s views of communication and speech-language pathology. International Journal of Speech and language Pathology, 13, 281–290. https://doi.org/10.3109/17549507.2011.577809.
McLeod, S. (2018). Communication rights: Fundamental human rights for all. International Journal of Speech-Language Pathology, 20, 3–11.
Mitchell, W., & Sloper, P. (2011). Making choices in my life: Listening to the ideas and experiences of young people in the UK who communicate non-verbally. Children and Youth Services Review, 33, 521–527.
Mundhenke, L., Hermansson, L., & Sjöqvist Nätterlund, B. (2010). Experiences of Swedish children with disabilities: activities and social support in daily life. Scandinavian Journal of Occupational Therapy, 17, 130–139. https://doi.org/10.3109/11038120903114386.
Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A., & Armomataris, E. (2018). Systematic review or scoping review? Guidance for authors when chossing between a systematic or scoping review. BMC Medical Research Methodology, 18, 143. https://doi.org/10.1186/s12874-018-0611-x.
Naraian, S. (2008). “I didn’t think I was going to like working with him, but now I really do!”: examining peer narratives of significant disability. Intellectual and Developmental Disabilities, 46, 106–119. https://doi.org/10.1352/0047-6765(2008)46[106:IDTIWG]2.0.CO;2.
Paige-Smith, A., & Rix, J. (2011). Researching early intervention and young children’s perspectives – developing and using a ‘listening to children approach’. British Journal of Special Education, 38, 28–36. https://doi.org/10.1111/j.1467-8578.2011.00494.x.
Pickering, D. M., Horrocks, L. M., Visser, K. S., & Todd, G. L. (2015). Analysing mosaic data by a ‘Wheel of Participation’ to explore physical activities and cycling with children and youth with cerebral palsy. International Journal of Developmental Disabilities, 61, 41–48. https://doi.org/10.1179/2047387714Y.0000000038.
Olcay-Gül, S., & Vuran, S. (2015). Children with special needs’ opinions and problems about inclusive practices. Egitim ve Bilim, 40, 169–195.
Schock, R. E. & Lee, E. A. (2016). Children's voices: perspectives on using assistive technology. Exceptionality Education International, 26, 76–94. Retrieved from https://ir.lib.uwo.ca/eei/vol26/iss1/5
Simmons, B., & Watson, D. (2015). From individualism to co-construction and back again: rethinking research methodology for children with profound and multiple learning disabilities. Child Care in Practice, 21, 50–66. https://doi.org/10.1080/13575279.2014.976179.
Spencer-Cavaliere, N., & Watkinson, E. J. (2010). Inclusion understood from the perspectives of children with disability. Adapted Physical Activity Quarterly, 27, 275–293. https://doi.org/10.1123/apaq.27.4.275.
Spyrou, S. (2011). The limits of children’s voices: from authenticity to critical, reflexive representation. Childhood, 18, 151–165. https://doi.org/10.1177/0907568210387834.
Tisdall, E. K. M. (2018). Applying human rights to children’s participation in research. In M. Twomey & C. Carroll (Eds.), Seen and heard: Participation, engagement and voice for children with disabilities. Oxford: Peter Lang. https://doi.org/10.3726/b11084.
Twomey, T., & Carroll, C. (2018). Seen and Heard: Participation, Engagement and Voice for Children with Disabilities. Oxford: Peter Lang.
United Nations. (1989). United nations convention on the rights of the child. Geneva: United Nations.
United Nations. (2006). UN convention on the rights of persons with disabilities. New York: United Nations.
What Works Clearinghouse, I. O. E. S., U.S. Department Of Education (2020). What Works Clearinghouse: Procedures Handbook (Version 4.1).
Willis, C. E., Reid, S., Elliott, C., Rosenberg, M., Nyquist, A., Jahnsen, R., & Girdler, S. (2018). A realist evaluation of a physical activity participation intervention for children and youth with disabilities: what works, for whom, in what circumstances, and how? BMC Pediatrics, 18, 113. https://doi.org/10.1186/s12887-018-1089-8.
World Health Organization. (2018). International classification of diseases (ICD-11). Geneva: World Health Organization.
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Carroll, C., Twomey, M. Voices of Children with Neurodevelopmental Disorders in Qualitative Research: a Scoping Review. J Dev Phys Disabil 33, 709–724 (2021). https://doi.org/10.1007/s10882-020-09775-5
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DOI: https://doi.org/10.1007/s10882-020-09775-5