Townend Gillian S, Marschik Peter B, Smeets Eric, van de Berg Raymond, van den Berg Mariёlle, Curfs Leopold M G
Rett Expertise Centre - Governor Kremers Centre, Maastricht University Medical Centre, PO Box 616, 6200 MD Maastricht, The Netherlands.
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.
J Dev Phys Disabil. 2016;28:101-112. doi: 10.1007/s10882-015-9455-z. Epub 2015 Oct 19.
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.
本文简要报告了家庭使用目光接触技术的经历，该技术是用于雷特综合征（RTT）患者的一种辅助和替代沟通（AAC）方式，以及他们在这方面所获得的建议、培训和支持。一项关于沟通和AAC的在线调查发送给了190个荷兰家庭；在回收的67份问卷中，63份回答了与目光接触技术相关的问题。根据以下参数对这63份问卷进行了分析：试验期和长期使用期间的经历；专业知识、建议和支持；资金；沟通进展；以及家庭满意度。在调查时，20名受访者正在使用或曾有过使用目光接触系统的经历，其中28名没有先前经验的受访者希望未来尝试使用该系统。经过试验期后，11套系统通过医疗保险获得了长期使用资金，有两个家庭认为该系统不适合他们。试验期间和长期使用后的支持水平各不相同。尽管对该技术感到沮丧，但对系统的满意度高于对支持的满意度。大多数家庭报告称，随着长期使用，孩子的技能有所进步。这些发现表明，尽管目光接触技术为RTT患者及其家庭带来了潜力，但供应商和知识渊博的AAC专业人员提供更多投入对于个人和家庭实现最大程度的受益至关重要。提供目光接触系统时，更高水平的培训和支持应成为“套餐”的一部分。
