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Eye Gaze Technology as a Form of Augmentative and Alternative Communication for Individuals with Rett Syndrome: Experiences of Families in The Netherlands (summary)

Eye-gaze
 
as
 
a
 
form
 
of
AAC
 
for
people
 
with
 
Rett
 
Syndrome

Background

Over recent years the use of eye-gaze and eye tracking technology to support communication for people with Rett syndrome (RTT) has increased with many families wanting high-tech eye gaze systems.

People who have RTT are commonly non-verbal and rely on behaviours being interpreted as communication attempts by carers and communication partners. Reliable assessment of levels of understanding or cognitive ability is difficult to achieve in this population. Eye gaze is often reported as the most frequent form of expressive communication for people with RTT and eye tracking control can potentially give access to computers and high tech voice output communication aids (VOCAs).

There is limited published research into the use of this type of system for people with RTT.

What did they do?

This study looked into the use of eye gaze and eye tracking technology from the point of view of families, considering the following questions;

  • Are families of individuals with RTT using eye gaze technology to enhance communication?

If so

  • What are the families support needs in relation to this and how well are they being met?
  • Do families see progress in their child’s communication skills?
  • What implications for future service delivery and support for communication can be drawn from families’ experiences?

 

190 Dutch families of people who had RTT were invited to complete an on-line survey. 67 families took part and 63 answered questions related to eye gaze technology.

What did they find?

20 families had past or current experience of using eye gaze systems, 40 families has never used this type of technology. Most of the twenty had had a short term trial of a device and all but two of these had requested funding for an eye gaze system of their own.

Of the families who had not trialled an eye-gaze device 28/43 wanted to do so, 23 of these people with RTT were under the age of 25. 10/13 people whose families did not want to trial the system were over 25.

The trial devices were found to have been used more consistently at home than in school, with custom made pages. On-going support was variable and all parents were responsible for programming devices themselves.

A large majority of families could see progress in their child’s levels of awareness and engagement and their ability to express themselves following provision of an eye-gaze system. They also felt there was increased understanding of language.

Families wanted; more support from suppliers in planning and preparation for a loan, longer trial periods and trials of a wider range of systems, increased knowledge of the technology among therapists and other professionals so that they could provide better support and cheap training workshops.

The value of self-help groups and networks was widely recognised.

Conclusions:

Most families who had experience of an eye gaze system were happy with it despite some frustrations. There is a need for further research into the use of this technology for individuals with RTT. The establishment of longer, well-supported trials and the development of a loan bank of equipment is identified as potentially beneficial.

Levels of training to support families are vital in developing successful use of these devices, as is the availability of knowledgeable professionals.

The families who took part in this survey would have liked the systems to be provided with preinstalled, personalised vocabularies and software to allow for development. The time needed to create these individually from scratch led to frustration. Commercially available pages and software widely used as a starting point in other countries are not available in Dutch.

More investigation is needed into the reasons for families of people over the age of 25 not being interested in this technology.

Cautions:

The sample use in this survey was small and restricted to The Netherlands. More follow up is needed.


Things you may want to look into:

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

Communication Intervention to Teach Requesting Through Aided AAC for Two Learners With Rett Syndrome

Rett UK

Rett Syndrome information

Added to site May 2016


 

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