title: Eye Gaze Technology as a Form of Augmentative and Alternative Communication for Individuals with Rett Syndrome: Experiences of Families in The Netherlands.
abstract: This paper provides a brief report on families' experiences of eye gaze technology as one form of augmentative and alternative communication (AAC) for individuals with Rett syndrome (RTT), and the advice, training and support they receive in relation to this. An online survey exploring communication and AAC was circulated to 190 Dutch families; of the 67 questionnaires that were returned, 63 had answered questions relating to eye gaze technology. These 63 were analysed according to parameters including: experiences during trial periods and longer-term use; expert knowledge, advice and support; funding; communicative progress; and family satisfaction. 20 respondents were using or had previous experience of using an eye gaze system at the time of the survey, 28 of those with no prior experience wanted to try a system in the future. Following a trial period, 11 systems had been funded through health insurance for long-term use and two families had decided a system was not appropriate for them. Levels of support during trials and following long-term provision varied. Despite frustrations with the technology, satisfaction with the systems was higher than satisfaction with the support. The majority of families reported progress in their child's skills with longer term use. These findings suggest that although eye gaze technologies offer potential to individuals with RTT and their families, greater input from suppliers and knowledgeable AAC professionals is essential for individuals and families to benefit maximally. Higher levels of training and support should be part of the 'package' when an eye gaze system is provided.
authors.affiliation: Rett Expertise Centre - Governor Kremers Centre, Maastricht University Medical Centre, PO Box 616, 6200 MD Maastricht, The Netherlands.
authors.forename: Gillian S
authors.identifier: 0000-0002-5448-9046
authors.initials: GS
authors.lastname: Townend
authors.affiliation: Institute of Physiology, Research Unit iDN - Interdisciplinary Developmental Neuroscience, Medical University of Graz, Graz, Austria ; Center of Neurodevelopmental Disorders (KIND), Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Peter B
authors.initials: PB
authors.lastname: Marschik
authors.affiliation: Rett Expertise Centre - Governor Kremers Centre, Maastricht University Medical Centre, PO Box 616, 6200 MD Maastricht, The Netherlands.
authors.forename: Eric
authors.initials: E
authors.lastname: Smeets
authors.affiliation: Rett Expertise Centre - Governor Kremers Centre, Maastricht University Medical Centre, PO Box 616, 6200 MD Maastricht, The Netherlands ; Division of Balance Disorders, Department of Otorhinolaryngology and Head and Neck Surgery, Faculty of Health Medicine and Life Sciences, School for Mental Health and Neuroscience, Maastricht University Medical Centre, Maastricht, The Netherlands ; Faculty of Physics, Tomsk State University, Tomsk, Russian Federation.
authors.forename: Raymond
authors.initials: R
authors.lastname: van de Berg
authors.affiliation: Nederlandse Rett Syndroom Vereniging, Dutch Rett Syndrome Parent Association, Utrecht, The Netherlands.
authors.forename: Mariёlle
authors.initials: M
authors.lastname: van den Berg
authors.affiliation: Rett Expertise Centre - Governor Kremers Centre, Maastricht University Medical Centre, PO Box 616, 6200 MD Maastricht, The Netherlands.
authors.forename: Leopold M G
authors.initials: LM
authors.lastname: Curfs
keywords: Augmentative and alternative communication (AAC); Communication; Eye gaze technology; Eye tracking; Rett syndrome; Support and training