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Survey for Independent Living for Young Adult Duchenne Muscular Dystrophy

Research Project

Project/Area Number 18K17566
Research Category

Grant-in-Aid for Early-Career Scientists

Allocation TypeMulti-year Fund
Review Section Basic Section 58070:Lifelong developmental nursing-related
Research InstitutionKyoto Prefectural University of Medicine

Principal Investigator

Yamaguchi Miku  京都府立医科大学, 医学部, 助教 (20771132)

Project Period (FY) 2018-04-01 – 2022-03-31
Project Status Completed (Fiscal Year 2021)
Budget Amount *help
¥3,510,000 (Direct Cost: ¥2,700,000、Indirect Cost: ¥810,000)
Fiscal Year 2020: ¥390,000 (Direct Cost: ¥300,000、Indirect Cost: ¥90,000)
Fiscal Year 2019: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000)
Fiscal Year 2018: ¥1,950,000 (Direct Cost: ¥1,500,000、Indirect Cost: ¥450,000)
Keywords在宅ケア / 重度障がい / デュシャンヌ型筋ジストロフィー / 重度訪問介護 / 医療的ケア / 家族 / 介護負担 / 筋ジストロフィー / 成人移行 / 自立 / 在宅 / 家族介護 / インフォーマルケア / 成人移行期 / 重度障害児者 / 在宅医療
Outline of Final Research Achievements

Through the home-visit care service, this study conducted a nationwide survey regarding the independence and quality of life of children and adults with severe disabilities or chronic diseases (including DMD patients). Its originality lies in its statistical results indicating the burden placed on the family of such individuals. Additionally, the study noted that especially for childhood-onset diseases, mothers provide continued home care for an average of 25 years, and over half of them do not receive support within the family. Furthermore, it was clarified that the hours of care received through the home-visit service differed greatly depending on the residence area, even if the severity of the disease was the same. Further study is needed to support the independence of people with high health care needs.

Academic Significance and Societal Importance of the Research Achievements

近年、医療的ケアが必要な子どもの7割は在宅療養であり、成長とともに長期にわたり支援が必要な人が増加すると考えられ、ケアニーズの高い子どもが成長後も安心して地域生活を送ることができるようになるための支援が求められている。本研究では、筋ジストロフィー患者の若年成人における自立の重要性と、家族の役割の変化を示した。さらに全国調査等を通して地域生活の状況や家族の負担を明らかにすることで、支援課題を明確にした。

Report

(5 results)
  • 2021 Annual Research Report   Final Research Report ( PDF )
  • 2020 Research-status Report
  • 2019 Research-status Report
  • 2018 Research-status Report
  • Research Products

    (9 results)

All 2022 2021 2020 2019

All Journal Article (1 results) (of which Peer Reviewed: 1 results) Presentation (8 results) (of which Int'l Joint Research: 7 results)

  • [Journal Article] Impact of informal care with multiple medical devices on caregiver burden: A cross‐sectional national survey in Japan2022

    • Author(s)
      Yamaguchi Miku、Ogita Mihoko、Harada Kiyomi
    • Journal Title

      Health & Social Care in the Community

      Volume: - Issue: 5 Pages: 1-11

    • DOI

      10.1111/hsc.13739

    • Related Report
      2021 Annual Research Report
    • Peer Reviewed
  • [Presentation] Risk factors for caregiver burden in home medical care dependent severe impairments: A cross-sectional study of home-based individuals2021

    • Author(s)
      Miku Yamaguchi, Mihoko Ogita, Kiyomi Harada
    • Organizer
      7th Pan-pacific Nursing Conference
    • Related Report
      2021 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Providing Informal Multiple Medical Care Induces a High Burden on Family Caregivers: A Cross-Sectional National Survey in Japan2021

    • Author(s)
      Miku Yamaguchi, Kiyomi Harada, Mihoko Ogita, Junko Honda
    • Organizer
      24th East Asian Forum of Nursing Scholars Conference
    • Related Report
      2021 Annual Research Report
    • Int'l Joint Research
  • [Presentation] Providing Informal Multiple Medical Care Induces a High Burden on Family Caregivers: A Cross-Sectional National Survey in Japan2021

    • Author(s)
      Miku Yamaguchi, Kiyomi Harada, Mihoko Ogita
    • Organizer
      The 24th East Asian Forum of Nursing Scholars Conference
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] Risk factors for caregiver burden in home medical care dependent severe impairments: A Cross-sectional study of home-based individuals2021

    • Author(s)
      Miku Yamaguchi, Mihoko Ogita, Kiyomi Harada
    • Organizer
      The 7th Pan-Pacific Nursing Conference
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] The caregiver burden in Japanese informal home care for severe disabilities: a comparative study of caregiving for spouse and child2020

    • Author(s)
      Miku Yamaguchi, Kiyomi Harada, Mihoko Ogita
    • Organizer
      The 6th International Nursing Research Conference of World Academy of Nursing Science
    • Related Report
      2020 Research-status Report 2019 Research-status Report
    • Int'l Joint Research
  • [Presentation] A basic survey of Japanese family caregivers of people with very severe disabilities2020

    • Author(s)
      Miku Yamaguchi, Kiyomi Harada, Mihoko Ogita
    • Organizer
      The 6th International Nursing Research Conference of World Academy of Nursing Science 2020年2月
    • Related Report
      2020 Research-status Report
    • Int'l Joint Research
  • [Presentation] A basic survey of Japanese family caregivers of people with very severe disabilities2020

    • Author(s)
      Miku Yamaguchi, Kiyomi Harada, Mihoko Ogita
    • Organizer
      The 6th International Nursing Research Conference of World Academy of Nursing Science
    • Related Report
      2019 Research-status Report
    • Int'l Joint Research
  • [Presentation] 重度訪問介護制度を利用している在宅重度障害児者の利用状況の全国調査2019

    • Author(s)
      山口 未久、荻田 美穂子、鈴木 真知子、原田 清美
    • Organizer
      第39回日本看護科学学会学術集会
    • Related Report
      2019 Research-status Report

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Published: 2018-04-23   Modified: 2023-01-30  

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