A trained communication partner's use of responsive strategies in aided communication with three adults with Rett syndrome: A case report.

Purpose: To explore and describe a trained communication partner's use of responsive strategies in dyadic interaction with adults with Rett syndrome. Introduction: Responsive partner strategies facilitate social, communicative, and linguistic development. The common feature is that the communication partner responds contingently to the other's focus of attention and interprets their acts as communicative. Research on responsive partner strategies that involves individuals with significant communication and motor disabilities remains sparse. The same applies to if, and how, the use of communication aids impacts on the partner's use of responsive strategies. Materials and methods: A therapist, trained in responsive partner strategies and aided communication interacted during 14 sessions with each of three participants. The participants were adults with Rett syndrome. A gaze-controlled device and responsive strategies were used during all sessions. The Responsive Augmentative and Alternative Communication Style scale (RAACS) was used to assess the partner's responsiveness. RAACS consists of 11 items including ratings of to what extent the partner is being attentive to, confirms, and expands the individual's communication. During eight of the 14 sessions, aided AAC Modelling was also used, i.e., the communication partner pointed at symbols on the gaze-controlled device while interacting. In addition to RAACS, each time the communication partner confirmed or expanded on communication when (a) the participants used the gaze-controlled device and (b) the participants did not use the gaze-controlled device was counted. Descriptive statistics were used to present the results. Non-parametric tests were used to compare means between the two conditions and between participants. Results: Inter-rater agreement for the different RAACS items ranged from 0.73 to 0.96 and was thus found to be fair to excellent. The communication partner's use of responsive strategies varied when communicating with different participants and the scores were higher when aided AAC modeling was used. The communication partner's number of responses and use of responsive strategies were higher when the participants communicated through a gaze-controlled device. Conclusion: The communication partner's use of responsive and scaffolding strategies is not a fixed construct but varies in interactions with different non-speaking persons. The same is true whether the non-speaking person uses a gaze-controlled device with digitized speech or not.

Development of a tool to assess visual attention in Rett syndrome: a pilot study.

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.

Development of consensus-based guidelines for managing communication of individuals with Rett syndrome.

Difficulties with communication have a profound impact on the lives of individuals with Rett syndrome and their caregivers. Globally, many families report difficulty accessing appropriate and timely information and services from professionals with expertise in augmentative and alternative communication (AAC) as it pertains to Rett syndrome. To address this need, international consensus-based guidelines for managing the communication of individuals with Rett syndrome were developed by combining available evidence and lived experience with expert opinion. A two-phase Delphi survey was built on statements and recommendations extracted from a review of over 300 pieces of literature combined with survey responses from communication professionals and caregivers. All statements that reached a pre-determined threshold of ≥70% agreement were incorporated into guidelines that consist of 268 statements and recommendations relating to (a) rights of the individual; (b) beliefs and attitudes of communication partners; (c) professional knowledge and team work; (d) strategies to optimize engagement; (e) assessment; and (f) intervention (targets and goals, techniques), including the use of AAC. To date, this project is the largest of its kind, with 650 participants from 43 countries contributing to development of consensus-based guidelines for Rett syndrome.

Gaze-Based Assistive Technology - Usefulness in Clinical Assessments.

Gaze-based assistive technology was used in informal clinical assessments. Excerpts of medical journals were analyzed by directed content analysis using a model of communicative competence. The results of this pilot study indicate that gaze-based assistive technology is a useful tool in communication assessments that can generate clinically relevant information.

Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services.

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. [Box: see text].