AAC barriers and facilitators for children with Koolen de Vries syndrome and childhood apraxia of speech: parent perceptions

References

• American Speech-Language-Hearing Association (2021, April 26). Augmentative and alternative communication (AAC). https://www.asha.org/public/speech/disorders/aac
   Google Scholar
• Assistive Technology Industry Association (2012). The critical need for knowledge and usage of AT and AAC among speech-language pathologists: Survey white paper. http://www.atia.org/files/public/ATIA%20SLP%20White%20Paper_9-18-12.pdf
   Google Scholar
• Atlas TI (2018). [Computer software]. https://atlasti.com
   Google Scholar
• Baxter, S., Enderby, P., Evans, P., & Judge, S. (2012). Barriers and facilitators to the use of high-technology augmentative and alternative communication devices: A systematic review and qualitative synthesis. International Journal of Language & Communication Disorders, 47(2), 115–120. doi:10.1111/j.1460-6984.2011.00090.x
   PubMed Web of Science ®Google Scholar
• Bengtsson, M. (2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8–14. doi:10.1016/j.npls.2016.01.001
   Google Scholar
• Beukelman, D., & Light, J. (2020). AAC assessment. In Augmentative and alternative communication: Supporting children and adults with complex communication needs (5th ed., pp. 19–90). Paul H. Brookes.
   Google Scholar
• Blischak, D., Lombardino, L., & Dyson, A. (2003). Use of speech-generating devices: In support of natural speech. Augmentative and Alternative Communication, 19(1), 29–35. doi:10.1080/0743461032000056478
   PubMedGoogle Scholar
• Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B., Ogletree, B. T., Paul, D., Romski, M., Sevcik, R., Siegel, E., Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities, 121(2), 121–138. doi:10.1352/1944-7558-121.2.121
   PubMedGoogle Scholar
• Brady, N., Skinner, D., & Roberts, J., & Hennon, E. (2006). Communication in young children with fragile X syndrome: A qualitative study of mothers’ perspectives. American Journal of Speech-Language Pathology, 15(4), 353–364. doi:10.1044/1058-0360(2006/033)
   PubMed Web of Science ®Google Scholar
• Breen, R. (2006). A practical guide to focus group research. Journal of Geography in Higher Education, 30(3), 463–475. doi:10.1080/03098260600927575
   Web of Science ®Google Scholar
• Campbell, J. L., Quincy, C., Osserman, J., & Pedersen, O. K. (2013). Coding in-depth semistructured interviews: Problems of unitization and intercoder reliability and agreement. Sociological Methods & Research, 42(3), 294–320. doi:10.1177/0049124113500475
   Web of Science ®Google Scholar
• Chung, Y., & Carter, E. W. (2013). Promoting peer interactions in inclusive classrooms for students who use speech-generating devices. Research and Practice for Persons with Severe Disabilities, 38(2), 94–109. doi:10.2511/027494813807714492
   Web of Science ®Google Scholar
• Chung, Y., & Stoner, J. B. (2016). A meta-synthesis of team members' voices: What we need and what we do to support students who use AAC. Augmentative and Alternative Communication, 32(3), 175–186. doi:10.1080/07434618.2016.1213766
   PubMed Web of Science ®Google Scholar
• Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches. SAGE Publications, Inc.
   Google Scholar
• Dietz, A., Quach, W., Lund, S. K., & McKelvey, M. (2012). AAC assessment and clinical-decision making: the impact of experience. Augmentative and Alternative Communication, 28(3), 148–159. doi:10.3109/07434618.2012.704521
   PubMed Web of Science ®Google Scholar
• Donato, C., Shane, H. C., & Hemsley, B. (2014). Exploring the feasibility of the visual language in autism program for children in an early intervention group setting: Views of parents, educators, and health professionals. Developmental Neurorehabilitation, 17(2), 115–124. doi:10.3109/17518423.2014.880526
   PubMed Web of Science ®Google Scholar
• Downe-Wambolt, B. (1992). Content analysis: Method, applications, and issues. Health Care for Women International, 13, 313–321. doi:10.1080/07399339209516006
   PubMedGoogle Scholar
• Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K., & Kyngäs, H. (2014). Qualitative content analysis: A focus on trustworthiness. SAGE Open, 4(1), 215824401452263. doi:10.1177/2158244014522633
   Google Scholar
• Erlingsson, C., & Brysiewicz, P. (2017). A hands-on guide to doing content analysis. African Journal of Emergency Medicine, 7(3), 93–99. doi:10.1016/j.afjem.2017.08.001
   PubMed Web of Science ®Google Scholar
• Fusch, P. I., & Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. The Qualitative Report, 20(9), 1408–1416. doi:10.46743/2160-3715/2015.2281
   Web of Science ®Google Scholar
• Glasson, E. J., & Hussain, R. (2008). Linked data: Opportunities and challenges in disability research. Journal of Intellectual & Developmental Disability, 33(4), 285–291. doi:10.1080/13668250802441409
   PubMed Web of Science ®Google Scholar
• Goldbart, J., & Marshall, J. (2004). “Pushes and pulls” on the parents of children who use AAC. Augmentative and Alternative Communication, 20(4), 194–208. doi:10.1080/07434610400010960
   Google Scholar
• Gormley, J., & Light, J. (2019). Providing services to individuals with complex communication needs in the inpatient rehabilitation setting: The experiences and perspectives of speech-language pathologists. American Journal of Speech-Language Pathology, 28(2), 456–468. doi:10.1044/2018_AJSLP-18-0076
   PubMed Web of Science ®Google Scholar
• Hanline, M. F., Dennis, L. R., & Warren, A. W. (2018). The outcomes of professional development on AAC use in preschool classrooms: A qualitative investigation. Infants & Young Children, 31(3), 231–245. doi:10.1097/IYC.0000000000000120
   Web of Science ®Google Scholar
• Hines, M., Balandin, S., & Togher, L. (2011). Communication and AAC in the lives of adults with autism: The stories of their older parents. Augmentative and Alternative Communication, 27(4), 256–266. doi:10.3109/07434618.2011.587830
   PubMed Web of Science ®Google Scholar
• Johnston, S., Blue, C., Gevarter, C., Ivy, S., & Stegenga, S. (2020). Opportunity barriers and promising practices for supporting individuals with complex communication needs. Current Developmental Disorders Reports, 7(3), 100–108. doi:10.1007/s40474-020-00195-w
   Google Scholar
• Johnston, S., Reichle, J., Feeley, K., & Jones, E. (2012). Augmentative and alternative communication strategies for individuals with severe disabilities. Paul H. Brookes.
   Google Scholar
• Kiarie, M. W. (2014). The role of policy in the development of special education. International Journal of Progressive Education, 10(3), 547–588.
   Google Scholar
• Koolen, D. A., Vissers, L. E., Pfundt, R., de Leeuw, N., Knight, S. J., Regan, R., Kooy, R. F., Reyniers, E., Romano, C., Fichera, M., Schinzel, A., Baumer, A., Anderlid, B. M., Schoumans, J., Knoers, N. V., van Kessel, A. G., Sistermans, E. A., Veltman, J. A., Brunner, H. G., & de Vries, B. B. (2006). A new chromosome 17q21.31 microdeletion syndrome associated with a common inversion polymorphism. Nature Genetics, 38(9), 999–1001. doi:10.1038/ng1853
   PubMed Web of Science ®Google Scholar
• Koolen, D. A., Kramer, J. M., Neveling, K., Nillesen, W. M., Moore-Barton, H. L., Elmslie, F. V., Toutain, A., Amiel, J., Malan, V., Tsai, A. C.-H., Cheung, S. W., Gilissen, C., Verwiel, E. T. P., Martens, S., Feuth, T., Bongers, E. M. H. F., de Vries, P., Scheffer, H., Vissers, L. E. L. M., … de Vries, B. B. A. (2012). Mutations in the chromatin modifier gene KANSL1 cause the 17q21.31 microdeletion syndrome. Nature Genetics, 44(6), 639–641. doi:10.1038/ng.2262
   PubMed Web of Science ®Google Scholar
• Koolen, D. A., Morgan, A., & de Vries, B. B. A. (2019). Koolen-de Vries syndrome. 2010 Jan 26 [Updated 2019 Jun 13]. In M. P., Adam, H. H., Ardinger, & R. A. Pagon (Eds.), GeneReviews^® [Internet] (pp. 1993–2022). University of Washington. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK24676/
   Google Scholar
• Kraft, M. A., Blazar, D., & Hogan, D. (2018). The effect of teacher coaching on instruction and achievement: A meta-analysis of the causal evidence. Review of Educational Research, 88(4), 547–588. doi:10.3102/0034654318759268
   Web of Science ®Google Scholar
• Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Sage Publications.
   Google Scholar
• Light, J., Barwise, A., Gardner, A. M., & Flynn, M. (2021). Personalized early AAC intervention to build language and literacy skills: A case study of a 3-year-old with complex communication needs. Topics in Language Disorders, 41, 209–231. doi:10.1097/TLD.0000000000000254
   PubMed Web of Science ®Google Scholar
• Light, J., Drager, K. (2019). Early intervention for young children with autism, cerebral palsy, Down syndrome, and other disabilities. https://aackids.psu.edu
   Google Scholar
• Marks, A. K. (2018). Interprofessionalism on the augmentative and alternative communication team: Mending the divide. Perspectives of the ASHA Special Interest Groups, 3(12), 70–79. doi:10.1044/persp3.SIG12.70
   Google Scholar
• Marvin, L. A., Montano, J. J., Fusco, L. M., & Gould, E. P. (2003). Speech-language pathologists’ perceptions of their training and experience in using alternative and augmentative communication. Contemporary Issues in Communication Science and Disorders, 30(Spring), 76–83. doi:10.1044/cicsd_30_S_76
   Google Scholar
• McNaughton, D., & Light, J. (2013). The iPad and mobile technology revolution: Benefits and challenges for individuals who require augmentative and alternative communication. Augmentative and Alternative Communication, 29(2), 107–116. doi:10.3109/07434618.2013.784930
   PubMed Web of Science ®Google Scholar
• McNaughton, D., Light, J., Beukelman, D., Klein, C., Nieder, D., & Nazareth, G. (2019). Building capacity in AAC: A person-centred approach to supporting participation by people with complex communication needs. Augmentative and Alternative Communication, 35(1), 56–68. doi:10.1080/07434618.2018.1556731
   PubMed Web of Science ®Google Scholar
• McNaughton, D., Rackensperger, T., Benedek-Wood, E., Krezman, C., Williams, M. B., & Light, J. (2008). “A child needs to be given a chance to succeed”: Parents of individuals who use AAC describe the benefits and challenges of learning AAC technologies. Augmentative and Alternative Communication, 24(1), 43–55. doi:10.1080/07434610701421007
   PubMed Web of Science ®Google Scholar
• Millar, D., Light, J. C., & Schlosser, R. W. (2006). The impact of augmentative and alternative communication intervention on the Speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language, and Hearing Research, 49(2), 248–264. doi:10.1044/1092-4388(2006/021)
   PubMed Web of Science ®Google Scholar
• Moorcroft, A., Scarinci, N., & Meyer, C. (2019a). A systematic review of the barriers and facilitators to the provision and use of low-tech and unaided AAC systems for people with complex communication needs and their families. Disability and Rehabilitation. Assistive Technology, 14(7), 710–731. doi:10.1080/17483107.2018.1499135
   PubMed Web of Science ®Google Scholar
• Moorcroft, A., Scarinci, N., & Meyer, C. (2019b). Speech pathologist perspectives on the acceptance versus rejection or abandonment of AAC systems for children with complex communication needs. Augmentative and Alternative Communication, 35(3), 193–204. doi:10.1080/07434618.2019.1609577
   PubMed Web of Science ®Google Scholar
• Morgan, A. T., Haaften, L. v., van Hulst, K., Edley, C., Mei, C., Tan, T. Y., Amor, D., Fisher, S. E., & Koolen, D. A. (2018). Early speech development in Koolen de Vries syndrome limited by oral praxis and hypotonia. European Journal of Human Genetics, 26(1), 75–94. doi:10.1038/s41431-017-0035-9
   PubMed Web of Science ®Google Scholar
• Morse, J. M. (2008). “What's your favorite color?” Reporting irrelevant demographics in qualitative research? Qualitative Health Research, 18(3), 299–300. doi:10.1177/1049732307310995
   PubMed Web of Science ®Google Scholar
• National Joint Committee for the Communication Needs of Persons With Severe Disabilities (1992). Guidelines for meeting the communication needs of persons with severe disabilities (Supplement #7, Vol. 34, pp. 1–8). ASHA.
   Google Scholar
• Ogletree, B. (2021). Challenges and solutions in augmentative and alternative communication (AAC). In B. Ogletree (Ed.), Augmentative and alternative communication: Challenges and solutions (pp. 3–17). Plural Publishing.
   Google Scholar
• Ogletree, B. T., McMurry, S., Schmidt, M., & Evans, K. (2018). The changing world of augmentative and alternative communication (AAC): Examining three realities faced by today's AAC provider. Perspectives of the ASHA Special Interest Groups, 3(12), 113–122. doi:10.1044/persp3.SIG12.113
   Google Scholar
• O’Neill, T., & Wilkinson, K. M. (2020). Preliminary investigation of the perspectives of parents of children with cerebral palsy on the supports, challenges, and realities of integrating augmentative and alternative communication into everyday life. American Journal of Speech-Language Pathology, 29(1), 238–254. doi:10.1044/2019_AJSLP-19-00103
   PubMed Web of Science ®Google Scholar
• Oommen, E., & McCarthy, J. (2015). Simultaneous natural speech and AAC interventions for children with childhood apraxia of speech: Lessons from a speech-language pathologist focus group. Augmentative and Alternative Communication, 31(1), 63–76. doi:10.3109/07434618.2014.1001520
   PubMed Web of Science ®Google Scholar
• Ratcliff, A., Koul, R., & Lloyd, L. (2008). Preparation in augmentative and alternative communication: An update for speech-language pathology training. American Journal of Speech-Language Pathology, 17(1), 48–59. doi:10.1044/1058-0360(2008/005)
   PubMed Web of Science ®Google Scholar
• Robinson, N., & Soto, G. (2021). AAC in schools: Mastering the art and science of inclusion. In B. Ogletree (Ed.), Augmentative and alternative communication: Challenges and solutions (pp. 81–116). Plural Publishing.
   Google Scholar
• Romski, M., & Sevcik, R. (2005). Early intervention and augmentative communication: Myths and realities. Infants & Young Children, 18(3), 174–185. doi:10.1097/00001163-200507000-00002
   Web of Science ®Google Scholar
• Rude, H., & Miller, K. J. (2018). Policy challenges and opportunities for rural special education. Rural Special Education Quarterly, 37(1), 21–29. doi:10.1177/8756870517748662
   Web of Science ®Google Scholar
• Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907. doi:10.1007/s11135-017-0574-8
   PubMed Web of Science ®Google Scholar
• Schlosser, R. W., McGhie-Richmond, D., Blackstien-Adler, S., Mirenda, P., Antonius, K., & Janzen, P. (1999). Training a school team to integrate technology meaningfully into the curriculum: Effects on student participation. Journal of Special Education Technology, 15(1), 31–44. doi:10.1177/016264340001500103
   Google Scholar
• Schlosser, R. W., & Wendt, O. (2008). Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology, 17(3), 212–230. doi:10.1044/1058-0360(2008/021)
   PubMed Web of Science ®Google Scholar
• Schochet, P. Z., Puma, M., Deke, J. (2014). Understanding variation in treatment effects in education impact evaluations: An overview of quantitative methods (NCEE 2014-4017). US Department of Education, Institute of Education Sciences, National Center for Education Evaluation and Regional Assistance, Analytic Technical Assistance and Development. http://ies.ed.gov/ncee/edlabs
   Google Scholar
• Sevcik, R., Romski, M., Walters, C., & Kaldes, G. (2021). Earlier is better: Challenges to implementing AAC during early intervention. In B. Ogletree (Ed.), Augmentative and alternative communication: Challenges and solutions (pp. 21–39). Plural Publishing.
   Google Scholar
• Soto, G., Muller, E., Hunt, P., & Goetz, L. (2001). Critical issues in the inclusion of students who use augmentative and alternative communication: An educational team perspective. Augmentative and Alternative Communication, 17(2), 62–72. doi:10.1080/aac.17.2.62.72
   Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. doi:10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• United States (2011). Individuals with Disabilities Education Improvement Act of 2004. ProQuest.
   Google Scholar