"Hitorigoto" notes and a special kana characters board improved quality of life in a patient with Shy-Drager syndrome at the end of life Toshiaki Tamura 1 , Mitsuhira Iiguchi 2 , Shinichi Noto 3 1Department of Rehabilitation, Ojiya-Sakura Hospital 2Department of Rehabilitation, Yukiguniyamato Hospital 3School of Occupational Therapy, Department of Health Science, Niigata University of Health and Welfare Keyword: 多系統萎縮症 , AAC , ディサースリア , QOL , 終末期 , multiple system atrophy , AAC , dysarthria , QOL , end of life pp.87-93
Published Date 2015/6/15
DOI https://doi.org/10.11477/mf.6001200039
  • Abstract
  • Look Inside
  • Reference

 Patients with intractable neurological disorders are often unable to communicate well at the end of life making the role of the speech-language-hearing therapist(ST)very important. In this paper, we report on the communication challenges faced by a patient with Shy-Drager syndrome(SDS)at the end of life. The patient was a 62-year-old woman whose symptoms included severe dysarthria, disturbance of ocular motility, double vision, Parkinsonism, and ataxia. Partner-assisted scanning and a special kana characters board(Eye-link and Eye-transfer)improved her communication during therapy. However, because of slow communication speed, her spontaneous communication did not improve. Therefore, we instigated the use of notes for "hitorigoto," meaning "talking to oneself," in order to record the thoughts that the patient expressed and to expand her communication range. The notes helped her family understand her thoughts and facilitated their communication with her. These interventions led to a slight improvement in the patient's Health Utilities Index(HUI)score, which reflected the improvement in her quality of life. When her communication ability declined subsequently, the patient and her family used the "hitorigoto" notes to commemorate her memory. The use of such notes can be useful as an augmentative and alternative communication system to improve HUI and quality of life in patients with severe SDS.

Copyright © 2015, Japanese Association of Speech-Language-Hearing Therapists. All rights reserved.


電子版ISSN 印刷版ISSN 1349-5828 日本言語聴覚士協会