Caligari Marco, Giardini Marica, Guenzi Marco
Integrated Laboratory of Assistive Solutions and Translational Research (LISART), Istituti Clinici Scientifici Maugeri IRCCS, Scientific Institute of Pavia, 27100 Pavia, Italy.
Istituti Clinici Scientifici Maugeri IRCCS, Scientific Institute of Veruno, 28010 Gattico-Veruno, Italy.
Brain Sci. 2022 Nov 10;12(11):1523. doi: 10.3390/brainsci12111523.
Locked-In Syndrome (LIS) is a rare neurological condition in which patients' ability to move, interact, and communicate is impaired despite their being conscious and awake. After assessing the patient's needs, we developed a customized device for an LIS patient, as the commercial augmentative and alternative communication (AAC) devices could not be used.
A 51-year-old woman with incomplete LIS for 15 years came to our laboratory seeking a communication tool. After excluding the available AAC devices, a careful evaluation led to the creation of a customized device (hardware + software). Two years later, we assessed the patient's satisfaction with the device.
A switch-operated voice-scanning communicator, which the patient could control by residual movement of her thumb without seeing the computer screen, was implemented, together with postural strategies. The user and her family were generally satisfied with the customized device, with a top rating for its effectiveness: it fit well the patient's communication needs.
Using customized AAC and strategies provides greater opportunities for patients with LIS to resolve their communication problems. Moreover, listening to the patient's and family's needs can help increase the AAC's potential. The presented switch-operated voice-scanning communicator is available for free on request to the authors.
闭锁综合征(LIS)是一种罕见的神经系统疾病,患者尽管意识清醒,但移动、互动和交流能力受损。在评估患者需求后,由于无法使用商业辅助和替代沟通(AAC)设备,我们为一名闭锁综合征患者开发了定制设备。
一名患有不完全闭锁综合征15年的51岁女性来到我们实验室寻求沟通工具。在排除现有的AAC设备后,经过仔细评估,制作了定制设备(硬件+软件)。两年后,我们评估了患者对该设备的满意度。
实现了一种开关操作的语音扫描通信器,患者无需看电脑屏幕,通过拇指的残余动作就能控制,同时采用了姿势策略。用户及其家人对定制设备总体满意,对其有效性给予高度评价:它很好地满足了患者的沟通需求。
使用定制的AAC和策略为闭锁综合征患者解决沟通问题提供了更多机会。此外,倾听患者及其家人的需求有助于提高AAC的潜力。如需,可向作者免费索取本文介绍的开关操作语音扫描通信器。