Designing for the "Universe of One": Personalized Interactive Media Systems for People with the Severe Cognitive Impairment Associated with Rett Syndrome
Designing for the "Universe of One": Personalized Interactive Media Systems for People with the Severe Cognitive Impairment Associated with Rett Syndrome
复制标题
为“一个宇宙”进行设计：为雷特综合症相关严重认知障碍患者提供个性化互动媒体系统
DOI：
10.1145/3025453.3025904
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发表时间：
2017
期刊：
影响因子：
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通讯作者：
Joanna McGrenere
中科院分区：
文献类型：
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作者：
A. Hornof;Haley Whitman;Marah Sutherland;Samuel Gerendasy;Joanna McGrenere
严重残疾人士的需求和能力往往是如此具体，以至于为他们设计就像为“一个人的宇宙”设计一样。该项目为患有Rett综合征的妇女解决了这一问题，Rett综合征是一种伴有严重认知、沟通和运动障碍的疾病。研究小组采用了参与式设计技术，与五名这样的妇女及其家庭合作，为这些妇女设计和评估新的辅助技术。这一过程表明，有一类媒体播放设备对患有Rett综合征的妇女普遍有用：可以加载多个音频或视频片段的系统；可由多个不同的开关激活；并立即响应开关点击。此外，系统应该允许护理人员设置每个片段的开始和结束时间，以及系统如何通过一系列片段推进。本文还讨论了在与家庭合作时观察到的模式。例如，父母分享了关于新辅助技术的长期但未经尝试的想法；并表达了对任何能帮助女儿自己做事的设备的强烈兴趣。
The needs and capabilities of a person with severe disabilities are often so specific that designing for the person is like designing for a "universe of one." This project addresses this problem for women with Rett syndrome, a disorder accompanied by severe cognitive, communication, and motor impairment. The research team adapted participatory design techniques to work with five such women, and their families, to design and evaluate new assistive technology for these women. The process suggests a class of media-playing devices that would be generally useful to women with Rett syndrome: systems that can load multiple audio or video segments; be activated by many different switches; and respond instantly to switch-hits. As well, the systems should permit a caregiver to set the start and end time of each segment, and how the system advances through a sequence of segments. The paper also discusses patterns that were observed when collaborating with the families. For example, parents shared longstanding but untried ideas for new assistive technology; and expressed a strong interest in any device that would help their daughters do things for themselves.