Development of a tool to assess visual attention in Rett syndrome: a pilot study

References

• Adamson, L. B., Bakeman, R., & Deckner, D. F. (2004). The development of symbol-infused joint engagement. Child Development, 75(4), 1171–1187. doi:10.1111/j.1467-8624.2004.00732.x
   PubMed Web of Science ®Google Scholar
• Allen, A. A., Schlosser, R. W., Brock, K. L., & Shane, H. C. (2017). The effectiveness of aided augmented input techniques for persons with developmental disabilities: A systematic review. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 33(3), 149–159. doi:10.1080/07434618.2017.1338752
   PubMed Web of Science ®Google Scholar
• Atkinson, J., & Braddick, O. (2012). Visual attention in the first years: Typical development and developmental disorders. Developmental Medicine and Child Neurology, 54(7), 589–595. doi:10.1111/j.1469-8749.2012.04294.x
   PubMed Web of Science ®Google Scholar
• Bartolotta, T. E., Zipp, G. P., Simpkins, S. D., & Glazewski, B. (2011). Communication skills in girls with Rett syndrome. Focus on Autism and Other Developmental Disabilities, 26(1), 15–24. doi:10.1177/1088357610380042
   Web of Science ®Google Scholar
• Benigno, J. P., & McCarthy, J. W. (2012). Aided symbol-infused joint engagement. Child Development Perspectives, 6(2), 181–186. doi:10.1111/j.1750-8606.2012.00237.x
   Web of Science ®Google Scholar
• Borgestig, M., Sandqvist, J., Parsons, R., Falkmer, T., & Hemmingsson, H. (2016). Eye gaze performance for children with severe physical impairments using gaze-based assistive technology-A longitudinal study. Assistive Technology : The Official Journal of Resna, 28(2), 93–102. doi:10.1080/10400435.2015.1092182
   PubMed Web of Science ®Google Scholar
• Bridge, P. D., & Sawilowsky, S. S. (1999). Increasing physicians’ awareness of the impact of statistics on research outcomes: Comparative power of the t-test and Wilcoxon rank-sum test in small samples applied research. Journal of Clinical Epidemiology, 52(3), 229–235. doi:10.1016/S0895-4356(98)00168-1
   PubMed Web of Science ®Google Scholar
• Carrasco, M. (2011). Visual attention: The past 25 years. Vision Research, 51(13), 1484–1525. doi:10.1016/j.visres.2011.04.012
   PubMed Web of Science ®Google Scholar
• Clarke, M., Woghiren, A., Sargent, J., Griffiths, T., Cooper, R., Croucher, L., … Swettenham, J. (2016, June, Abstract). Eye-Pointing Classification in Non-Speaking Children with Severe Cerebral Palsy. Paper Presented at the International Conference on Cerebral Palsy and Other Childhood-Onset Disabilities, Stockholm. http://edu.eacd.org/sites/default/files/Meeting_Archive/Stockholm-16/Abstract-book-16.pdf
   Google Scholar
• Clarke, M.T., Sargent, J, Cooper, R, Aberbach, G., McLaughlin, L., Panesar, P., Woghiren, A., Griffiths, T., Price, K., Rose, C., Swettenham, J. (In Press). Development and testing of the Eye-pointing Classification Scale for Children with Cerebral Palsy. Disability and Rehabilitation.
   Google Scholar
• Cress, C. J., Grabast, J., & Burgers Jerke, K. (2013). Contingent interactions between parents and young children with severe expressive communication impairments. Communication Disorders Quarterly, 34(2), 81–96. doi:10.1177%2F1525740111416644
   Web of Science ®Google Scholar
• Dada, S., & Alant, E. (2009). The effect of aided language stimulation on vocabulary acquisition in children with little or no functional speech. American Journal of Speech-Language Pathology, 18(1), 50–64. doi:10.1044/1058-0360(2008/07-0018)
   PubMed Web of Science ®Google Scholar
• Didden, R., Korzilius, H., Smeets, E., Green, V. A., Lang, R., Lancioni, G. E., & Curfs, L. M. (2010). Communication in individuals with Rett syndrome: An assessment of forms and functions. Journal of Developmental and Physical Disabilities, 22(2), 105–118. doi:10.1007/s10882-009-9168-2
   PubMed Web of Science ®Google Scholar
• Downs, J., Bebbington, A., Kaufmann, W. E., & Leonard, H. (2011). Longitudinal hand function in Rett syndrome. Journal of Child Neurology, 26(3), 334–340. doi:10.1177%2F0883073810381920
   PubMed Web of Science ®Google Scholar
• Downs, J., Parkinson, S., Ranelli, S., Leonard, H., Diener, P., & Lotan, M. (2014). Perspectives on hand function in girls and women with Rett syndrome. Developmental Neurorehabilitation, 17(3), 210–217. doi:10.1177%2F0883073810381920
   PubMed Web of Science ®Google Scholar
• Drager, K. D. R., Postal, V. J., Carrolus, L., Castellano, M., Gagliano, C., & Glynn, J. (2006). The effect of aided language modeling on symbol comprehension and production in two preschoolers with autism. American Journal of Speech-Language Pathology, 15(2), 112–125. doi:10.1044/1058-0360(2006/012)
   PubMed Web of Science ®Google Scholar
• Dube, W. V., & Wilkinson, K. M. (2014). The potential influence of stimulus overselectivity in AAC: Information from eye tracking and behavioral studies of attention with individuals with intellectual disabilities. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 30(2), 172–185. doi:10.3109/07434618.2014.904924
   PubMed Web of Science ®Google Scholar
• Fabio, R. A., Antonietti, A., Castelli, I., & Marchetti, A. (2009). Attention and communication in Rett syndrome. Research in Autism Spectrum Disorders, 3(2), 329–335. doi:10.1016/j.rasd.2008.07.005
   Web of Science ®Google Scholar
• Fabio, R. A., Giannatiempo, S., Oliva, P., & Murdaca, A. M. (2011). The increase of attention in Rett syndrome: A pre-test/post-test research design. Journal of Developmental and Physical Disabilities, 23(2), 99–111. doi:10.1007/s10882-010-9207-z
   Web of Science ®Google Scholar
• Findlay, J. M. (2003). Visual selection, covert attention and eye movements. In J. M. Findlay & I. D. Gilchrist (Eds.), Active vision: The psychology of looking and seeing (Vol. 37, pp. 1–27). Oxford: Oxford University Press.
   Google Scholar
• Forssman, L., & Wass, S. V. (2018). Training basic visual attention leads to changes in responsiveness to social‐communicative cues in 9-month-olds. Child Development, 89(3), e199. doi:10.1111/cdev.12812
   PubMed Web of Science ®Google Scholar
• Fritz, C. O., Morris, P. E., & Richler, J. J. (2012). Effect size estimates: Current use, calculations, and interpretation. Journal of Experimental Psychology. General, 141(1), 2–18. doi:10.1037/a0024338
   PubMed Web of Science ®Google Scholar
• Johnson, J. M., Inglebret, E., Jones, C., & Ray, J. (2006). Perspectives of speech language pathologists regarding success versus abandonment of AAC. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 22(2), 85–99. doi:10.1080/07434610500483588
   PubMed Web of Science ®Google Scholar
• Julien, H. M., Parker-McGowan, Q., Byiers, B. J., & Reichle, J. (2015). Adult interpretations of communicative behavior in learners with Rett syndrome. Journal of Developmental and Physical Disabilities, 27(2), 167–182. doi:10.1007/s10882-014-9407-z
   Web of Science ®Google Scholar
• Kazdin, A. E. (2013). Research design in clinical psychology. Boston, MA: Pearson Education.
   Google Scholar
• Koegel, R. L., Koegel, L. K., & McNerney, E. K. (2001). Pivotal areas in intervention for autism. Journal of Clinical Child Psychology, 30(1), 19–32. doi:10.1207/S15374424JCCP3001_4
   PubMedGoogle Scholar
• Larsson, G., & Witt Engerström, I. (2001). Gross motor ability in Rett syndrome: The power of expectation, motivation and planning. Brain and Development, 23, S77–S81. doi:10.1016/S0387-7604(01)00334-5
   PubMed Web of Science ®Google Scholar
• McHugh, M. L. (2012). Interrater reliability: The kappa statistic. Biochemia Medica, 22(3), 276–282. doi:10.11613/BM.2012.031
   PubMed Web of Science ®Google Scholar
• Munde, V., Vlaskamp, C., Ruijssenaars, W., & Nakken, H. (2011). Determining alertness in individuals with profound intellectual and multiple disabilities: The reliability of an observation list. Education and Training in Autism and Developmental Disabilities, 46, 116–123. https://www.jstor.org/stable/23880035
   Web of Science ®Google Scholar
• Mundy, P., Delgado, C., Block, J., Venezia, M., Hogan, A., & Seibert, J. (2003). Early Social Communication Scales (ESCS). Miami, OH: University of Miami.
   Google Scholar
• Neul, J. L., Kaufmann, W. E., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., … Percy, A. K, RettSearch Consortium. (2010). Rett syndrome: Revised diagnostic criteria and nomenclature. Annals of Neurology, 68(6), 944–950. doi:10.1002/ana.22124
   PubMed Web of Science ®Google Scholar
• Rose, S. A., Djukic, A., Jankowski, J. J., Feldman, J. F., & Rimler, M. (2016). Aspects of attention in Rett syndrome. Pediatric Neurology, 57, 22–28. doi:10.1016/j.pediatrneurol.2016.01.015
   PubMed Web of Science ®Google Scholar
• Prinsen, C. A., Mokkink, L. B., Bouter, L. M., Alonso, J., Patrick, D. L., De Vet, H. C., & Terwee, C. B. (2018). COSMIN guideline for systematic reviews of patient-reported outcome measures. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 27(5), 1147–1157. doi:10.1007/s11136-018-1798-3
   PubMed Web of Science ®Google Scholar
• Sandberg, A. D., Ehlers, S., Hagberg, B., & Gillberg, C. (2000). The Rett syndrome complex: Communicative functions in relation to developmental level and autistic features. Autism, 4(3), 249–267. doi:10.1177/1362361300004003003
   Google Scholar
• Sargent, J., Clarke, M., Price, K., Griffiths, T., & Swettenham, J. (2013). Use of eye-pointing by children with cerebral palsy: What are we looking at? International Journal of Language & Communication Disorders, 48(5), 477–485. doi:10.1111/1460-6984.12026
   PubMed Web of Science ®Google Scholar
• Sigafoos, J., Kagohara, D., van der Meer, L., Green, V. A., O’Reilly, M. F., Lancioni, G. E., … Zisimopoulos, D. (2011). Communication assessment for individuals with Rett syndrome: A systematic review. Research in Autism Spectrum Disorders, 5(2), 692–700. doi:10.1016/j.rasd.2010.10.006
   Web of Science ®Google Scholar
• Tate, R. L., Perdices, M., Rosenkoetter, U., Shadish, W., Vohra, S., Barlow, D. H., … Wilson, B. (2016). The Single-Case Reporting Guideline In BEhavioural Interventions (SCRIBE) 2016 Statement. Evidence-Based Communication Assessment and Intervention, 10(1), 44–58. doi:10.1080/17489539.2016.1190525
   PubMedGoogle Scholar
• Tegler, H., Pless, M., Blom Johansson, M., & Sonnander, K. (2019). Speech and language pathologists' perceptions and practises of communication partner training to support children's communication with high-tech speech generating devices . Disability and Rehabilitation. Assistive Technology, 14(6), 581–589. doi:10.1080/17483107.2018.1475515
   PubMed Web of Science ®Google Scholar
• Townend, G. S., Bartolotta, T. E., Urbanowicz, A., Wandin, H., & Curfs, L. M. G. (2020). Development of consensus based guidelines for managing communication of individuals with Rett syndrome. Augmentative and Alternative Communication. 1–12.
   PubMed Web of Science ®Google Scholar
• Townend, G. S., Marschik, P. B., Smeets, E., van de Berg, R., van den Berg, M., & Curfs, L. M. G. (2016). Eye gaze technology as a form of augmentative and alternative communication for individuals with Rett syndrome: Experiences of families in the Netherlands. Journal of Developmental and Physical Disabilities, 28, 101–112. doi:10.1007/s10882-015-9455-z
   PubMed Web of Science ®Google Scholar
• Urbanowicz, A., Downs, J., Girdler, S., Ciccone, N., & Leonard, H. (2015). Aspects of speech-language abilities are influenced by MECP2 mutation type in girls with Rett syndrome. American Journal of Medical Genetics Part A, 167(2), 354–362. doi:10.1002/ajmg.a.36871
   Web of Science ®Google Scholar
• Urbanowicz, A., Downs, J., Girdler, S., Ciccone, N., & Leonard, H. (2016). An exploration of the use of eye gaze and gestures in females with Rett syndrome. Journal of Speech, Language, and Hearing Research , 59(6), 1373–1383. doi:10.1044/2015_JSLHR-L-14-0185
   PubMed Web of Science ®Google Scholar
• Wandin, H., Lindberg, P., & Sonnander, K. (2015). Communication intervention in Rett syndrome: A survey of speech language pathologists in Swedish health services. Disability and Rehabilitation, 37(15), 1324–1333. doi:10.3109/09638288.2014.962109
   PubMed Web of Science ®Google Scholar
• Wilder, J. (2008). Proximal processes of children with profound multiple disabilities. (Doctoral Dissertation), Stockholm University, Stockholm.
   Google Scholar
• Wilder, J., Axelsson, C., & Granlund, M. (2004). Parent-child interaction: A comparison of parents' perceptions in three groups. Disability and Rehabilitation, 26(21–22), 1313–1322. doi:10.1080/09638280412331280343
   PubMed Web of Science ®Google Scholar
• Wilkinson, K. M., Dennis, N. A., Webb, C. E., Therrien, M., Stradtman, M., Farmer, J., … Zeuner, C. (2015). Neural activity associated with visual search for line drawings on AAC displays: An exploration of the use of fMRI. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 31(4), 310–324. doi:10.3109/07434618.2015.1100215
   PubMed Web of Science ®Google Scholar
• Wilkinson, K. M., & Jagaroo, V. (2004). Contributions of principles of visual cognitive science to AAC system display design. Augmentative and Alternative Communication, 20(3), 123–136. doi:10.1080/07434610410001699717
   Google Scholar
• Wilkinson, K. M., & Mitchell, T. (2014). Eye tracking research to answer questions about augmentative and alternative communication assessment and intervention. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 30(2), 106–119. doi:10.3109/07434618.2014.904435
   PubMed Web of Science ®Google Scholar
• Vlaskamp, C., Fonteine, H., & Tadema, A. (2005). Manual of the list ’Alertness in children with profound intellectual and multiple disabilities’. [Handleiding bij de lijst ‘Alertheid van kinderen met zeer ernstige verstandelijke en meervoudige beperkingen’]. Groningen: Stichting Kinderstudies.
   Google Scholar
• World Health Organization. (2001). International classification of functioning, disability and health (ICF). www.who.int/iris/handle/10665/42407
   Google Scholar
• Yoder, P., & Symons, F. J. (2010). Observational measurement of behavior. New York: Springer Publishing Co Inc.
   Google Scholar
• Yu, C. (2007). Embodied active vision in language learning and grounding. In L. Paletta & E. Rome (Eds.), Attention in cognitive systems. Theories and systems from an interdisciplinary viewpoint. WAPCV 2007. Lecture notes in computer science (Vol. 4840, pp. 75–90). Berlin, Heidelberg: Springer.
   Google Scholar
• Yu, C., & Smith, L. (2013). Joint attention without gaze following: Human infants and their parents coordinate visual attention to objects through eye-hand coordination. PLoS One, 8(11), e79659. doi:10.1371/journal.pone.0079659
   PubMed Web of Science ®Google Scholar