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Heredity-related difficulties concerning families having children with hereditary rare diseases and discussion on seamless support for the families

Research Project

Project/Area Number 16K20802
Research Category

Grant-in-Aid for Young Scientists (B)

Allocation TypeMulti-year Fund
Research Field Lifelong developmental nursing
Research InstitutionNihon institute of Medical Science

Principal Investigator

Sakaguchi Yukiko  日本医療科学大学, 保健医療学部, 准教授 (00438855)

Research Collaborator KUBO Kyoko  東京医療保健大学, 東が丘・立川看護学部, 教授 (10320798)
TAZAKI Chieko  日本保健医療大学, 保健医療学部, 教授 (00389892)
SHISHIDO Mika  東京医療保健大学, 東が丘・立川看護学部, 講師 (90505554)
Project Period (FY) 2016-04-01 – 2019-03-31
Project Status Completed (Fiscal Year 2018)
Budget Amount *help
¥3,900,000 (Direct Cost: ¥3,000,000、Indirect Cost: ¥900,000)
Fiscal Year 2018: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Fiscal Year 2017: ¥1,040,000 (Direct Cost: ¥800,000、Indirect Cost: ¥240,000)
Fiscal Year 2016: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Keywords希少難病 / 遺伝 / 家族看護 / シームレス / 遺伝性希少難病 / 家族支援 / ライソゾーム病 / 家族 / グリーフケア / 看護学 / 医療・福祉
Outline of Final Research Achievements

We conducted a survey on difficulties concerning families having children with hereditary rare diseases, and discussed a way of how to support those families. The information of heredity has to be kept private from the viewpoint of protection of private information. Share of such heredity information is out of the question, which have made it difficult to establish a network for supporting the families having children with hereditary rare diseases. This study revealed that it was the process toward having the second child that caused conflicts between husband and wife having the first child with a hereditary rare disease and made their relationship unstable. It was found necessary to assist those married couples in deepening the mutual understanding over the process toward having the second child, as well as generally support the children with hereditary rare diseases throughout their lifetime.

Academic Significance and Societal Importance of the Research Achievements

遺伝の問題は当該家族にとって重大で深刻な問題である。「知れば知るほど辛い」と家族に大きな苦痛を与えており、早急な支援が求められている。遺伝病児を持つ夫婦への出生前診断・遺伝カウンセリングに関する英国の調査では、夫婦は必要な情報を持っておらず、タイムリーな支援が必要であると報告している。国内では、出生前診断や遺伝カウンセリングに関する研究は散見されるが、遺伝の問題に具体的で実戦可能な看護を提示する研究は認められない。本研究は、遺伝性希少難病児を持つ親の次児誕生を巡るプロセスや夫婦関係が揺れる時期を明らかにした。このことは、当該家族をタイムリーに支援するためのデータとして意義があると考える。

Report

(4 results)
  • 2018 Annual Research Report   Final Research Report ( PDF )
  • 2017 Research-status Report
  • 2016 Research-status Report
  • Research Products

    (8 results)

All 2018 2017 Other

All Journal Article (1 results) (of which Peer Reviewed: 1 results) Presentation (5 results) (of which Int'l Joint Research: 1 results) Remarks (2 results)

  • [Journal Article] 遺伝病児をもつ親の次児誕生を巡るプロセスと夫婦間のギャップ2018

    • Author(s)
      坂口由紀子、久保恭子、宍戸路佳、田崎知恵子、佐鹿孝子
    • Journal Title

      日本医療科学大学研究紀要

      Volume: 11 Pages: 69-77

    • NAID

      40021847119

    • Related Report
      2018 Annual Research Report
    • Peer Reviewed
  • [Presentation] 在宅療養児を亡くした母親がうけた訪問看護師からのグリーフケア2018

    • Author(s)
      久保恭子、宍戸路佳、坂口由紀子、佐鹿孝子、田崎知恵子
    • Organizer
      第65回日本小児保健協会学術集会
    • Related Report
      2018 Annual Research Report
  • [Presentation] 進行性稀少難病の児の在宅療養に伴う親の困難2018

    • Author(s)
      田崎知恵子、久保恭子、坂口由紀子
    • Organizer
      第65回日本小児保健協会学術集会
    • Related Report
      2018 Annual Research Report
  • [Presentation] 希少難病児の在宅療養において母親が抱く不安と訪問看護師の支え2017

    • Author(s)
      坂口由紀子、久保恭子、田崎知恵子、佐鹿孝子
    • Organizer
      日本小児看護学会 第27回学術集会
    • Related Report
      2017 Research-status Report
  • [Presentation] 成人した希少難病を持つ子どもを養育する親の体験2017

    • Author(s)
      田崎知恵子、久保恭子、坂口由紀子、佐鹿孝子
    • Organizer
      第64回日本小児保健協会学術集会
    • Related Report
      2017 Research-status Report
  • [Presentation] Mothers’ load and home-visiting nurses’ support in home medical treatment of children with rare diseases2017

    • Author(s)
      Yukiko Sakaguchi, Kyoko Kubo, Chieko Tazaki, Mika Shishido, Takako Sashika
    • Organizer
      21st East Asian Forum of Nursing Scholars & 11th International Nursing Conference
    • Related Report
      2017 Research-status Report
    • Int'l Joint Research
  • [Remarks] フランス在宅医療研修の報告会

    • URL

      https://www.family-health.jp

    • Related Report
      2018 Annual Research Report
  • [Remarks] ムコ多糖症 生活の工夫~自然派~

    • URL

      https://www.family-health.jp

    • Related Report
      2018 Annual Research Report

URL: 

Published: 2016-04-21   Modified: 2020-03-30  

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