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Research Papers

Choice making in Rett syndrome: a descriptive study using video data

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Pages 813-819 | Received 18 Apr 2016, Accepted 24 Dec 2016, Published online: 23 Jan 2017

References

  • Amir RE, Van den Veyver IB, Wan M, et al. Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nat Genet. 1999;23:185–188.
  • Neul J, Kaufmann W, Glaze D, et al. Rett syndrome: revised diagnostic criteria and nomenclature. Ann Neurol. 2010;68:944–950.
  • Cass H, Reilly S, Owen L, et al. Findings from a multidisciplinary clinical case series of females with Rett syndrome. Dev Med Child Neurol. 2003;45:325–337.
  • Didden R, Korzilius H, Smeets E, et al. Communication in individuals with Rett syndrome: an assessment of forms and functions. J Dev Phys Disabil. 2010;22:105–118.
  • Urbanowicz A, Leonard H, Girdler S, et al. Parental perspectives on the communication abilities of their daughters with Rett syndrome. Dev Neurorehabil. 2016;19:17–25.
  • Urbanowicz A, Downs J, Girdler S, et al. Aspects of speech-language abilities are influenced by MECP2 mutation type in girls with Rett syndrome. Am J Med Genet A. 2015;167:354–362.
  • Bartolotta TE, Zipp GP, Simpkins SD, et al. Communication skills in girls with Rett syndrome. Focus Autism Dev Disabil. 2011;26:15–24.
  • Hagberg B. Rett syndrome: clinical peculiarities and biological mysteries. Acta Paediatr. 1995;84:971–976.
  • Hagberg B, Hanefeld F, Percy A, et al. An update on clinically applicable diagnostic criteria in Rett syndrome: comments to Rett Syndrome Clinical Criteria Consensus Panel Satellite to European Paediatric Neurology Society Meeting Baden Baden, Germany, 11 September 2001. Eur J Paediatr Neurol. 2002;6:293–297.
  • Walker EM, Crawford F, Leonard H. Community participation: conversations with parent-carers of young women with Rett syndrome. J Intellect Dev Disabil. 2014;39:243–252.
  • Wandin H, Lindberg P, Sonnander K. Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services. Disabil Rehabil. 2015;37:1324–1333.
  • Townend GS, Marschik P, Smeets E, et al. Eye gaze technology as a form of augmentative and alternative communication for individuals with Rett syndrome: experiences of families in The Netherlands. J Dev Phys Disabil. 2016;28:101–112.
  • Cianfaglione R, Clarke A, Kerr M, et al. A national survey of Rett syndrome: age, clinical characteristics, current abilities, and health. Am J Med Genet A. 2015;167:1493–1500.
  • Sigafoos J, Laurie S, Pennell D. Preliminary assessment of choice making among children with Rett syndrome. J Assoc Pers Sev Handicaps. 1995;20:175–184.
  • Stasolla F, Perilli V, Di Leone A, et al. Technological aids to support choice strategies by three girls with Rett syndrome. Res Dev Disabil. 2015;36:36–44.
  • Sigafoos J, Laurie S, Pennell D. Teaching children with Rett syndrome to request preferred objects using aided communication: two preliminary studies. Augment Altern Commun. 1996;12:88–96.
  • Elefant C, Wigram T. Learning ability in children with Rett syndrome. Brain Dev. 2005;27:S97–S101.
  • Ryan D, McGregor F, Akermanis M, et al. Facilitating communication in children with multiple disabilities: three case studies of girls with Rett syndrome. Disabil Rehabil. 2004;26:1286–1277.
  • Hetzroni O, Rubin C. Identifying patterns of communicative behaviours in girls with Rett syndrome. Augment Altern Commun. 2006;22:48–61.
  • Fyfe S, Downs J, McIlroy O, et al. Development of a video-based evaluation tool in Rett syndrome. J Autism Dev Disord. 2007;37:1636–1646.
  • Msall M, DiGaudio K, Rogers B, et al. The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities. Clin Pediatr. 1994;33:421–430.
  • Rowland C. Communication matrix: especially for parents. Portland (OR): Design to Learn Products; 2004.
  • Rowland C. Using the communication matrix to assess expressive skills in early communicators. Commun Disord Quart. 2011;32:190–201.
  • Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas. 1960;20:37–46.
  • Portney LG, Watkins MP. Foundations of clinical research: applications to practice. Upper Saddle River (NJ): Pearson Education Inc.; 2009.
  • Downs J, Bebbington A, Jacoby P, et al. Gross motor profile in Rett syndrome as determined by video analysis. Neuropediatrics. 2008;39:205–210.
  • Downs J, Bebbington A, Jacoby P, et al. Level of purposeful hand function as a marker of clinical severity in Rett syndrome. Dev Med Child Neurol. 2010;52:817–823.
  • Downs J, Torode I, Wong K, et al. The natural history of scoliosis in females with Rett Syndrome. Spine. 2015;41:856–863.
  • StataCorp LP. STATA 12. College Station, TX; 2011.
  • Pence Turnbull KL, Justice LM. Language development from theory to practice. Upper Saddle River (NJ): Pearson; 2012.
  • Wetherby AM, Prizant B. Communication and symbolic behavior scales developmental profile infant-toddler checklist. Baltimore (MD): Paul H. Brookes Publishing Co., Inc.; 2002.
  • Urbanowicz A, Downs J, Girdler S, et al. An exploration of the use of eye gaze and gestures in females with Rett syndrome. J Speech Lang Hear Res. 2016;59:1373–1383.
  • Sigafoos J, Dempsey R. Assessing choice making among children with multiple disabilities. J Appl Behav Anal. 1992;25:747–755.
  • Julien HM, Parker-McGowan Q, Byiers BJ, et al. Adult interpretations of communicative behavior in learners with Rett syndrome. J Dev Phys Disabil. 2015;27:167–182.

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