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"An Attempt to Conduct ALS Patient Meetings Using the Internet"

MATSUBARA Yoko, MIZUKI Shodo, HIDAKA Tomoo & SATO Tatsuya

last update: 20151225


An Attempt to Conduct ALS Patient Meetings Using the Internet

MATSUBARA Yoko, MIZUKI Shodo, HIDAKA Tomoo & SATO Tatsuya
Abstract:
Patients suffering from amyotrophic lateral sclerosis (ALS) gradually become unable to move due to paralyses of the extremities and the trunk, and experience difficulties in speaking as the disease progresses. Under such circumstances, participation in patient meetings becomes burdensome tasks. ALS patients, however, retain clear consciousness and verbal communication is possible with the use of a personal computer or communication aid. In this study, by means of action research, we discussed issues associated with the trials for an effective, simple, and low-cost real-time meeting system. Such system will allow patients, their families, and caregivers to realize real-time communication on their own via the Internet, by connecting a meeting place, patient homes and hospitals. In particular, ALS patients and researchers collaboratively planned and conducted a patient meeting and made live coverage of the meeting possible along with interactive communication among participants in a hall and patients at homes in distant places using an instant messenger (IM). As a result, we confirmed the effectiveness of the IM, but also found the need for detailed technical assistance for patients and their families, and identified the issue of balance between the use of IM software and the operation stability of communication aids.


Keywords: ALS, communication, Internet, assistive technology

REV: 20151225
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