Symbol-Based Communication Intervention for Individuals with Rett Syndrome

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Symbol-Based Communication Intervention for Individuals with Rett Syndrome Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1690 Symbol-based communication intervention for individuals with Rett syndrome Current practices, assessment of visual attention, and communication partner strategies HELENA WANDIN ACTA UNIVERSITATIS UPSALIENSIS ISSN 1651-6206 ISBN 978-91-513-1030-5 UPPSALA urn:nbn:se:uu:diva-421107 2020 Dissertation presented at Uppsala University to be publicly examined in Gunnar Johanssonsalen, (14:K120), Blåsenhus, von Kraemers allé 1A, Uppsala, Thursday, 26 November 2020 at 09:00 for the degree of Doctor of Philosophy (Faculty of Medicine). The examination will be conducted in Swedish. Faculty examiner: Associate professor Jacob Åsberg (Institute of Neuroscience and Physiology, Gothenburg University). Abstract Wandin, H. 2020. Symbol-based communication intervention for individuals with Rett syndrome. Current practices, assessment of visual attention, and communication partner strategies. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1690. 59 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-1030-5. Individuals with Rett syndrome need extensive support to actively participate in social interaction and to develop their communication. The overall aim of this thesis was to investigate communication intervention for individuals with Rett syndrome, especially aided symbol-based communication and partner strategies. Study I was a cross-sectional survey exploring services provided by speech language pathologists (SLPs) in Sweden. Communication aids were often used in the intervention and were found to be useful. Few SLPs used systematic tools for assessment and evaluation and communication partners were often instructed through informal conversations. In study II, a tool (AVAI) for assessing visual attention in interaction was developed and its psychometric properties were explored. AVAI was also used as an outcome measure in study III. In both studies, the tool was found to be reliable, able to detect change and acceptable to the participants. In study III, a single case experimental design was applied to evaluate an intervention consisting of aided language modelling whilst using responsive partner strategies and a gaze- controlled device. The adult participants with Rett syndrome (n=3) increased their expressive communication following individual learning patterns. The intervention was appreciated by the participants’ social network. Study IV was a case study exploring and describing a communication partner’s use of responsive and scaffolding partner strategies in interaction with individuals with Rett syndrome (n=3). The use of these strategies varied in interaction with different individuals with Rett syndrome. The communication partner responded more frequently to communication through a gaze-controlled device than unaided communication. In conclusion, gaze-controlled devices should be considered in communication intervention with individuals with Rett syndrome. Systematic tools and procedures should be applied in interventions, which is not the case in current clinical practice. Adults with Rett syndrome are able to develop their communication which highlights the need for communication support throughout their lifetime. Keywords: aided communication, augmentative and alternative communication (AAC), assessment tools, communication intervention, eye-gaze technology, partner strategies, Rett syndrome, visual attention Helena Wandin, Department of Public Health and Caring Sciences, Box 564, Uppsala University, SE-75122 Uppsala, Sweden. © Helena Wandin 2020 ISSN 1651-6206 ISBN 978-91-513-1030-5 urn:nbn:se:uu:diva-421107 (http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-421107) List of Papers This thesis is based on the following papers, which are referred to in the text by their Roman numerals. I 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. II Wandin, H., Lindberg, P., & Sonnander, K. Development of a tool to assess visual attention in Rett syndrome. A pilot study. Augmentative and Alternative Communication, 36(2):118-127 III Wandin, H., Lindberg, P., & Sonnander, K. Aided language model- ling, responsive communication, and eye-gaze technology as commu- nication intervention for adults with Rett Syndrome. Three experi- mental single case studies. Manuscript IV Wandin, H., Lindberg, P., & Sonnander, K. An explorative case study of a trained communication partner’s use of responsive and scaffold- ing partner strategies in aided communication with adults with Rett syndrome. Manuscript. Reprints were made with permission from the respective publishers. Contents Introduction................................................................................................... 11 Communication and interaction ............................................................... 11 Communication development .............................................................. 11 Symbol-based communication ............................................................. 12 Communication in individuals with significant communication and motor disabilities ................................................................................. 12 Rett syndrome .......................................................................................... 13 Communication in Rett syndrome ....................................................... 15 Tools to assess communication in Rett syndrome ............................... 16 Communication intervention .................................................................... 18 ICF....................................................................................................... 18 Communication intervention services ................................................. 19 Aided communication.......................................................................... 20 Partner strategies in aided communication intervention ...................... 21 Rett syndrome and communication intervention ................................. 23 Rationale ....................................................................................................... 25 Aims .............................................................................................................. 27 The empirical studies .................................................................................... 28 Overview .................................................................................................. 28 Ethical considerations .............................................................................. 28 Study I ...................................................................................................... 29 Participants .......................................................................................... 29 Materials and procedure ...................................................................... 29 Data analysis ........................................................................................ 29 Results ................................................................................................. 30 Discussion ............................................................................................ 31 Study II ..................................................................................................... 32 Participants .......................................................................................... 32 Materials and procedure ...................................................................... 32 Data analysis ........................................................................................ 33 Results ................................................................................................. 33 Discussion ............................................................................................ 34 Studies III & IV........................................................................................ 34 Participants .......................................................................................... 34 Materials and procedure ...................................................................... 35 Measures and data analysis study III ................................................... 35 Results study III................................................................................... 36 Discussion study III ............................................................................. 37 Measures and data analysis study IV ................................................... 37 Results study IV................................................................................... 38 Discussion study IV ............................................................................. 38 General discussion ........................................................................................ 39 Intervention .............................................................................................. 39 Partner strategies.................................................................................. 39 Eye gaze communication ..................................................................... 40 Communication intervention for adults with Rett syndrome ............... 41 Methodological discussion ....................................................................... 41 Design.................................................................................................
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