難病療養者のQOL維持に必要な情報通信サービスの条件

Abstract

The purpose of this research is to discuss the necessary condition and contents for the intractable disease persons like Parkinson Disease, Spinocerebellar Degeneration to maintain QOL at home in relation to the condition of the information and telecommunication service. Therefore, we carried out the questionnaire survey including the question contents with regard to the electron information and telecommunication service means, etc. We intended to reveal the effect of information and telecommunication services and the contents acquired; how they influenced the ADL situation and QOL at home. Also, we carried out the same survey to the residents in the same area as the contrast group, to highlight the characteristic of the intractable disease persons in the Kansai area in 1998. Result of 149 intractable disease persons and 416 residents were collected. We concluded that the individual condition of disease and convalescence of the physiological function associated with the aging ; such as the inconvenience of seeing and hearing ; had to be taken into consideration what and how the information should be offered. Also, the wide selection for the application of the electron information and telecommunication means should be conceivable from the familiar information mediation application such as the family and administration publicity magazine, to help finding out which means fit best for each individual. We concluded that the various information focused on the interest and admiration of majority individuals will enhance the QOL of homebound intractable disease persons.