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"Analysis of IT-supported Communication Opportunities for ALS Patients"

HIDAKA Tomoo, MIZUKI Shodo, SATO Tatsuya & MATSUBARA Yoko

last update: 20151225


Analysis of IT-supported Communication Opportunities for ALS Patients

HIDAKA Tomoo, MIZUKI Shodo, SATO Tatsuya & MATSUBARA Yoko
Abstract:
In this study we focused on the actual condition of communication among ALS patients and analyzed the structure of the circumstances. The following two data were analyzed: One is the chat log of Yahoo Messenger and the other is the observation record of the overall atmosphere and the patient's communication. The result was summarized into the following two points. 1) ALS patients need a long time to express their intention, and so they often make only simple expressions, e.g. making a greeting, in their common communication. However, in the present experimental communication with the help of information technology (IT), the patients not only made simple greetings, but also had long conversations including chat and jokes. 2) Frequent silence was observed in the dialog between the ALS patients and unimpaired people, due to the patient's requirement for an extended period of time to manifest their intention. Some caregivers, who were supposed to comprehend the patient's intention and speak for the patients, could not bear the silence, did not wait for the patient's manifestation of their intention, and removed the patient's right to speak, paying attention to other members. This indicated the difference between the patients and the unimpaired people regarding the consideration of silence.


Keywords: ALS, communication, QOL, patient advocacy, assistive technology

REV: 20151225
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