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Symbol-based communication intervention for individuals with Rett syndrome: Current practices, assessment of visual attention, and communication partner strategies
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Nationellt Center för Rett syndrom och närliggande diagnoser, National Center for Rett syndrome and Related Disorders. (Forskning om funktionshinder och habilitering, Research in Disability and Habilitation)
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 [en]
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: urn:nbn:se:uu:diva-421107ISBN: 978-91-513-1030-5 (print)OAI: oai:DiVA.org:uu-421107DiVA, id: diva2:1474858
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
List of papers
1. Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services
Open this publication in new window or tab >>Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services
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
Keywords
Augmentative and alternative communication, communication, intervention, Rett syndrome, speech language pathology, Sweden
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-234368 (URN)10.3109/09638288.2014.962109 (DOI)000357763700015 ()25250808 (PubMedID)
Available from: 2014-10-17 Created: 2014-10-17 Last updated: 2020-10-10Bibliographically approved
2. Development of a tool to assess visual attention in Rett syndrome: a pilot study
Open this publication in new window or tab >>Development of a tool to assess visual attention in Rett syndrome: a pilot study
2020 (English)In: Augmentative and Alternative Communication: AAC, ISSN 0743-4618, E-ISSN 1477-3848, Vol. 36, no 2, p. 118-127Article in journal (Refereed) Published
Abstract [en]

This was a two-phase study that aimed to (a) develop a tool for assessing visual attention in individuals with Rett syndrome using AAC with a communication partner during naturalistic interactions in clinical settings; and (b) explore aspects of the tool's reliability, validity, and utility. The Assessment of Visual Attention in Interaction (AVAI) tool was developed to assess visual attention operationalized as focused gazes (1 s or longer) at the communication partner, an object, and a symbol set. For the study, six video-recorded interactions with nine female participants diagnosed with Rett syndrome (range: 15-52-years-old) were used to calculate intra- and inter-rater agreement, and 18 recorded interactions were analyzed to examine sensitivity to change and acceptability. There was a significant difference in the AVAI results between two conditions (with and without aided-language modeling). Inter-rater agreement ranged from moderate and strong. There was a range in scores, indicating that the AVAI could differentiate between participants. The AVAI was found to be reliable, able to detect change, and acceptable to the participants. This tool could potentially be used for evaluating interventions that utilize aided AAC.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2020
Keywords
Assessment, psychometric properties, Rett syndrome, social interaction, tool development, visual attention
National Category
Other Health Sciences
Research subject
Molecular Medicine
Identifiers
urn:nbn:se:uu:diva-421103 (URN)10.1080/07434618.2020.1798507 (DOI)000559548700001 ()32791851 (PubMedID)
Available from: 2020-10-05 Created: 2020-10-05 Last updated: 2021-08-31Bibliographically approved
3. Aided language modelling, responsive communication and eye-gaze technology as communication intervention for adults with Rett syndrome: three experimental single case studies
Open this publication in new window or tab >>Aided language modelling, responsive communication and eye-gaze technology as communication intervention for adults with Rett syndrome: three experimental single case studies
2021 (English)In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 18, no 7, p. 1011-1025Article in journal (Refereed) Published
Abstract [en]

Purpose To examine the effect of a communication intervention package on expressive communication and visual attention in individuals with Rett syndrome. Materials and methods A modified withdrawal (A-B1-A1-B2-A2) single case experimental design with a direct inter-subject replication across three participants was applied. Three women with Rett syndrome participated. The study took place over a six-week period and comprised 32 sessions with each participant. All sessions were video recorded. During the intervention the communication partner used aided language modelling on a gaze-controlled device in combination with using responsive partner strategies. Expressive communication was assessed as synthesised words per minute and unique synthesised words per minute. Visual attention was assessed as rate of focused gazes (1 s or longer) in interaction. Results An intervention effect was found on the rate of unique words for all participants. The rate of words increased for two participants when the intervention was introduced but no withdrawal effect could be seen. An intervention effect on visual attention could be seen for one participant. The intervention appeared to have social validity as reported by caregivers. Conclusion Aided language modelling (ALM), while using responsive partner strategies and a gaze-controlled device may be used with adult individuals with Rett syndrome to increase their rate of expressive communication. Detailed observational measures revealed individual learning patterns, which may provide clinically valuable insights.

Place, publisher, year, edition, pages
Taylor & Francis, 2021
Keywords
Augmentative and alternative communication (AAC), intervention, aided language modelling, Rett syndrome SCED
National Category
Other Health Sciences
Identifiers
urn:nbn:se:uu:diva-421105 (URN)10.1080/17483107.2021.1967469 (DOI)000690858000001 ()
Available from: 2020-10-05 Created: 2020-10-05 Last updated: 2023-10-30
4. An exploratory case study of a trained communication partner’s use of responsive and scaffolding partner strategies in aided communication with adults with Rett syndrome
Open this publication in new window or tab >>An exploratory case study of a trained communication partner’s use of responsive and scaffolding partner strategies in aided communication with adults with Rett syndrome
(English)Manuscript (preprint) (Other academic)
Keywords
Responsivity, partner strategies, intervention, augmentative and alternative communication (AAC), Responsive and ALternative Communicative Style scale, Rett syndrome
National Category
Other Health Sciences
Identifiers
urn:nbn:se:uu:diva-421106 (URN)
Available from: 2020-10-05 Created: 2020-10-05 Last updated: 2020-10-10

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