2003 Fiscal Year Final Research Report Summary
Development of the support system via the internet for patients and their families with hereditary
| Project/Area Number |
12672296
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Single-year Grants |
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| Section | 一般 |
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| Research Field |
基礎・地域看護学
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| Research Institution | Tokai University |
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Principal Investigator |
MIZOGUCHI Michiko Tokai University, School of Health Sciences, Professor, 健康科学部, 教授 (00287103)
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| Project Period (FY) |
2000 – 2003
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| Keywords | consultation / internet / PKD / professional volunteer / hereditary disease |
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| Research Abstract |
Purpose : This research project was conducted to support for the patients and their families with inherited disorder such as ADPKD via the Internet.
Methods : 1) Home page "Gen-Nurse" was set on web site located to the campus of Tokai University. The HP presented the information that of medical and psycho-social matter which the patients and their families with inherited disorder might have. Especially the information was focused on ADPKD in many inherited disorder as a trial of this research. 2) The consultation was provided to those with ADPKD who accessed via the Internet, phone, fax, and by post.
Results : 1) Accessed mean numbers were two to three hundreds per month. One of the unique points of the information in this HP was for user to know how human gene influences to one's body and how the patients and their families with ADPKD can live for their daily life which they want to know truly. 2) Total 70 consultations have provided nation wildly. The content could be integrated into the 5 perspectives of : i) provision of information, ii) support for understanding heredity and the disorder, iii) advice in undergoing treatment, iv) support in seeking treatment, v) dealing with anxiety and distress associated with heredity or the physical condition. These were found to be servicing the function of complementing the extant medical care system through timely response to the consulter at the very moment of their difficulty, in this case, by a professional volunteer. As such, it is believed that this service utilizing available. IT is a valid and effective method particularly in cases such as the genetic disorders for which information is relatively difficult to acquire, and in which a somewhat private, closed environment is desired in the consultation.
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