Rare neurological diseases in children: current paradigm of communicational interventions and inclusion
The goal of the presented work is to identify the optimum strategy for the enhancement of communication in patients with rare neurological disorders based on different models. With rapidly developing alternative communication technologies it becomes essential to identify an access method for a child and chose the alternative system of communication. Communication difficulties are common in children with rare neurological disorders. These disorders are manifested with motor, cognitive and sensory deficit. Speech and language therapy applied in these categories of patients is presented in various research publications. When forming a message, human communicators typically use a combination of modes: cognitive, psychological, or psycholinguistic sense to facilitate the way children construct internal representations that can be encoded and presented in different forms. Comprehensive assessment and recommendation of appropriate augmentative and alternative communication (AAC) systems are critical factors in the success of interventions for individuals with rare neurological disorders who have complex communication needs. The assessment of communication difficulties associated with rare diseases is an essential factor for the development of AAC technologies for these pediatric patients. The methods applied in the presented research are: analysis of different studies and, systematization and generalization of the research evidence. Enhancement of communication in patients with rare neurological disorders should be based on the integration of cognitive, psychological, or psycholinguistic models. For children with rare neurological disorders that eventually lead to speech, cognitive and psychological disturbances, AAC methods are the strategies of choice to facilitate communication. These tools with different access methods are used to support inclusion of children with rare neurological conditions into education system.
Antonell, A., del Campo, M., Magano, L.F., Kaufmann, L., Martinez de la Iglesia, J., Gallastegui, F., & Perez-Jurado, L.A. (2010). Partial 7q11.23 deletions further implicate GTFI and GTF2IRD1 as the main genes responsible for the Williams-Beuren syndrome neurocognitive profile. Journal of Medical Genetics, 47, 312–320. doi: 10.1136/jmg.2009.071712. Epub 2009 Nov 5. PMID: 19897463
Mervis, C.B., & John, A.E. (2010). Cognitive and behavioral characteristics of children with Williams syndromeImplications for intervention approaches. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 154 C(2), 229–248. doi: 10.1002/ajmg.c.30263
Laureys, S., Pellas, F., van Eeckhout, P., Ghorbel, S., Schnakers, C., Perrin, F., Berr, J., Faymonville. M., Pantke, K.H., Damas, F., Lamy, M., Moonen, G., & Goldman, S. (2005). The locked-in syndrome what is it like to be conscious but paralyzed and voiceless? Progress in brain research, 150, 495–511. DOI: 10.1016/S0079-6123(05)50034-7
Neul, J.L., Lane, J.B., Lee, H.S., Geerts, S., Barrish, J.O., Annese, F., & Percy, A.K. (2014). Developmental delay in Rett syndrome. Data from the natural history study. Journal of Neurodevelopment Disorders, 6(1), 20. doi: 10.1186/1866-1955-6-20
Reichow, B., George-Puskar, A., Lutz, T., Smith, I.C., & Volkmar, F.R. (2015). Brief report. Systematic review of Rett syndrome in males. Journal of Autism and Development Disorders, 45, 3377–3383. doi: 10.1007/s10803-015-2519-1
Borgestig, M., Sandqvist, J., Parsons, R., Falkmer, T., & Hemmingsson, H. (2015). Eye gaze performance for children with severe physical impairmentsusing gaze-based assistive technology – A longitudinal study. Assistive Technology, 28(2), 93–102. doi: 10.1080/10400435.2015.1092182
Carnahan, K.D., Arner, M., & Gunnar, H.G. (2007). Association between gross motor function (GMFCS) and manual ability (MACS) in children with cerebral palsy. A population-based study of 359 children. BMC Musculoskelet Disord, 21(8), 50. https://doi.org/10.1186/1471-2474-8-50
Kent-Walsh, J., Murza, K.A., Malani, M.D., & Binger, C. (2015). Effects of communication partner instruction on the communication of individuals using AACa meta-analysis. Augment Altern Commun, 31(4), 271–84. DOI:10.3109/07434618.2015.1052153
Virella, D., Pennington, L., Andersen, G.L., et al. (2016). Classification systems of communication for use in epidemiological surveillance of children with cerebral palsy. Developmental Medicine & Child Neurology, 58(3), 285–291. doi: 10.1111/dmcn.12866
Pennington, L., & Mcconachie, H. (2001). Communication with children with severe motor impairments: the effects of speech intelligibility. International Journal of Language and Communication Disorders, 36(3), 371–394.
Gillies, R.M. (2006). Teachers’ and students’ verbal behaviours during cooperative and small-group learning. British Journal Education Psychology, 76(2), 271–287. DOI:10.1348/000709905X52337
Schnewolf-Greulich, B., Stahlhut, M., Larsen, J.L., Syhler, B., & Bisgaard, A.M. (2017). Functional abilities in aging women with Rett syndrome – the Danish cohort. Disabil Rehabil, 39(9), 911–918. doi: 10.3109/09638288.2016.1170896
Slavin, R.E. (1986). Best-evidence synthesis: An alternative to meta-analytic and traditional reviews. Educational Researcher, 15, 5–11.
Abstract views: 189 PDF Downloads: 110
This work is licensed under a Creative Commons Attribution 4.0 International License.