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Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. (Forskning om funktionshinder och habilitering)
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. (Forskning om funktionshinder och habilitering)
2015 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 15, p. 1324-1333Article in journal (Refereed) Published
Abstract [en]

Purpose: To investigate communication intervention that speech language pathologists (SLPs) provide to people with Rett syndrome. Methods: A web-based survey targeting all Swedish SLPs working with people currently receiving support from habilitation services. Results: The SLPs reportedly followed recommended practice in the following aspects: (1) Information on communicative function was collected from several sources, including observation in well-known settings and reports from the client s social network, (2) Multimodal communication was promoted and, (3) Responsive partner strategies were largely targeted in the intervention. However, few instruments or standard procedures were used and partner instruction was given informally. Most SLPs used communication aids in the intervention and their general impression of using communication aids was positive. Further, augmentative and alternative communication (AAC) was estimated to increase and clarify communicative contributions from the person. Conclusions: Communication aids were reported to have a positive influence on communicative functions. Swedish SLP services followed best practice in several aspects, but there are areas with potential for development. Tools and best practice guidelines are needed to support SLPs in the AAC process for clients with Rett syndrome.

Place, publisher, year, edition, pages
Informa Healthcare, 2015. Vol. 37, no 15, p. 1324-1333
Keywords [en]
Augmentative and alternative communication, communication, intervention, Rett syndrome, speech language pathology, Sweden
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-234368DOI: 10.3109/09638288.2014.962109ISI: 000357763700015PubMedID: 25250808OAI: oai:DiVA.org:uu-234368DiVA, id: diva2:756495
Available from: 2014-10-17 Created: 2014-10-17 Last updated: 2020-10-10Bibliographically approved
In thesis
1. Symbol-based communication intervention for individuals with Rett syndrome: Current practices, assessment of visual attention, and communication partner strategies
Open this publication in new window or tab >>Symbol-based communication intervention for individuals with Rett syndrome: Current practices, assessment of visual attention, and communication partner strategies
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.    

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2020. p. 59
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1690
Keywords
aided communication, augmentative and alternative communication (AAC), assessment tools, communication intervention, eye-gaze technology, partner strategies, Rett syndrome, visual attention
National Category
Other Health Sciences
Research subject
Health Care Research
Identifiers
urn:nbn:se:uu:diva-421107 (URN)978-91-513-1030-5 (ISBN)
Public defence
2020-11-26, Gunnar Johanssonsalen, (14:K120), Blåsenhus, von Kraemers allé 1A, Uppsala, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2020-11-04 Created: 2020-10-10 Last updated: 2021-01-22

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Publisher's full textPubMedhttp://informahealthcare.com/doi/abs/10.3109/09638288.2014.962109

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Wandin, HelenaLindberg, PerSonnander, Karin

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