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Development of a tool to assess visual attention in Rett syndrome: a pilot study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation. 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)
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, Research in Disability and Habilitation.ORCID iD: 0000-0002-8623-2413
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. Vol. 36, no 2, p. 118-127
Keywords [en]
Assessment, psychometric properties, Rett syndrome, social interaction, tool development, visual attention
National Category
Other Health Sciences
Research subject
Molecular Medicine
Identifiers
URN: urn:nbn:se:uu:diva-421103DOI: 10.1080/07434618.2020.1798507ISI: 000559548700001PubMedID: 32791851OAI: oai:DiVA.org:uu-421103DiVA, id: diva2:1473217
Available from: 2020-10-05 Created: 2020-10-05 Last updated: 2021-08-31Bibliographically 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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Wandin, HelenaLindberg, PerSonnander, Karin

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