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Development of the support system via the internet for patients and their families with hereditary

Research Project

Project/Area Number 12672296
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeSingle-year Grants
Section一般
Research Field 基礎・地域看護学
Research InstitutionTokai University

Principal Investigator

MIZOGUCHI Michiko  Tokai University, School of Health Sciences, Professor, 健康科学部, 教授 (00287103)

Co-Investigator(Kenkyū-buntansha) 渋谷 栄  東海大学, 健康科学部, 助手 (10328164)
大石 ふみ子  東海大学, 健康科学部, 講師 (10276876)
Project Period (FY) 2000 – 2003
Project Status Completed (Fiscal Year 2003)
Budget Amount *help
¥3,000,000 (Direct Cost: ¥3,000,000)
Fiscal Year 2003: ¥600,000 (Direct Cost: ¥600,000)
Fiscal Year 2002: ¥500,000 (Direct Cost: ¥500,000)
Fiscal Year 2001: ¥500,000 (Direct Cost: ¥500,000)
Fiscal Year 2000: ¥1,400,000 (Direct Cost: ¥1,400,000)
Keywordsconsultation / internet / PKD / professional volunteer / hereditary disease / 遺伝 / 相談 / 検査 / 情報
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.

Report

(5 results)
  • 2003 Annual Research Report   Final Research Report Summary
  • 2002 Annual Research Report
  • 2001 Annual Research Report
  • 2000 Annual Research Report
  • Research Products

    (3 results)

All Other

All Publications (3 results)

  • [Publications] 溝口 満子: "多発性嚢胞腎に関する相談-Telenursingとしての役割-"日本遺伝看護研究会誌. 2(^*Accepted). (2004)

    • Description
      「研究成果報告書概要(和文)」より
    • Related Report
      2003 Final Research Report Summary
  • [Publications] Michiko Mizoguchi: "Counseling for polycystic kidney disease-The role as telenursing-"Journal of Genetic Nursing Committee in Japan. Vol-1(in press). (2004)

    • Description
      「研究成果報告書概要(欧文)」より
    • Related Report
      2003 Final Research Report Summary
  • [Publications] 溝口 満子: "多発性嚢胞腎に関する相談-Telenursingとしての役割-"日本遺伝看護研究会誌. 2(In press). (2004)

    • Related Report
      2003 Annual Research Report

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Published: 2000-04-01   Modified: 2016-04-21  

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