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Training program about care practice for people with Prader-willi syndrome in adulthood

Research Project

Project/Area Number 25670968
Research Category

Grant-in-Aid for Challenging Exploratory Research

Allocation TypeMulti-year Fund
Research Field Lifelong developmental nursing
Research InstitutionUniversity of Yamanashi

Principal Investigator

NAKAGOMI Satoko  山梨大学, 総合研究部, 教授 (10254484)

Co-Investigator(Kenkyū-buntansha) KATO Yoshiro  関西福祉科学大学, 健康福祉学部健康科学科, 講師 (40615829)
SASAKI Noriko  長崎大学, 医歯(薬)学総合研究科, 助教 (90315268)
KUTSUNUGI Saeko  山口大学, 医学(系)研究科, 助教 (50513785)
GOTO Kiyoe  独立行政法人国立病院機構新潟病院(臨床研究部), 臨床心理・遺伝カウンセリング研究室, 臨床心理・遺伝カウンセリング研究室室長 (30331531)
KUKINAKA Chieko  熊本大学, 生命科学研究部, 准教授 (60274726)
Research Collaborator MATSUDO Yoshiko  
Project Period (FY) 2013-04-01 – 2016-03-31
Project Status Completed (Fiscal Year 2015)
Budget Amount *help
¥3,640,000 (Direct Cost: ¥2,800,000、Indirect Cost: ¥840,000)
Fiscal Year 2015: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2014: ¥1,040,000 (Direct Cost: ¥800,000、Indirect Cost: ¥240,000)
Fiscal Year 2013: ¥1,690,000 (Direct Cost: ¥1,300,000、Indirect Cost: ¥390,000)
Keywordsプラダー・ウィリー症候群 / 遺伝看護 / ケアギバー / グループホーム / 成人期 / 支援者教育 / 基本的ニード / ケア方法 / 生活習慣 / プラダー・ウィリー症候群 / ケアギバー教育 / 成人期患者
Outline of Final Research Achievements

Participants of this study were fifteen people with Prader-Willi Syndrome in adulthood. They were getting enough to eat from three years and experienced over BMI 25. Parent were distressed of the food environment and behavior management. Four were onset diabetes when they were school age. After diagnosis, parents seek information about PWS, they removed temptation, established good eating routines, offered a wide variety of healthy food, and started fitness or walking.Finally every participant’s family noticed people with PWS needed to be a 24 hour type of supervision. The PWS-specific environments could keep themselves good condition but overworking for family. 14 participants work or worked at social-welfare work place or part time job. Every participant wishes to work or to be useful.
People with PWS needed supervision by trained caregiver and family. Caregiver need to understand about the advantage and disadvantage of people with PWS.

Report

(4 results)
  • 2015 Annual Research Report   Final Research Report ( PDF )
  • 2014 Research-status Report
  • 2013 Research-status Report
  • Research Products

    (5 results)

All 2016 2015 2014

All Presentation (5 results) (of which Invited: 2 results)

  • [Presentation] A descriptive study on fulfilling fundamental human needs of people with Prader-Willi Syndrome in adulthood2016

    • Author(s)
      Satoko Nakagomi
    • Organizer
      第40回日本遺伝カウンセリング学会
    • Place of Presentation
      京都府京都市
    • Year and Date
      2016-04-03
    • Related Report
      2015 Annual Research Report
  • [Presentation] 成人期のPrader-Willi症候群の人の基本的ニード関する2事例の報告2015

    • Author(s)
      松土良子
    • Organizer
      第14回日本遺伝看護学会
    • Place of Presentation
      熊本県熊本市
    • Year and Date
      2015-10-10
    • Related Report
      2015 Annual Research Report
  • [Presentation] Prader-Willi症候群をもつ成人の基本的ニードの充足度に関する記述研究2015

    • Author(s)
      中込さと子
    • Organizer
      第14回日本遺伝看護学会
    • Place of Presentation
      熊本県熊本市
    • Year and Date
      2015-10-10
    • Related Report
      2015 Annual Research Report
  • [Presentation] プラダー・ウィリー症候群がある人々と家族を通して考える2014

    • Author(s)
      後藤清恵
    • Organizer
      日本家族看護学会 第21回学術集会
    • Place of Presentation
      川崎医療福祉大学(岡山県倉敷市)
    • Year and Date
      2014-08-09 – 2014-08-10
    • Related Report
      2014 Research-status Report
    • Invited
  • [Presentation] プラダー・ウィリー症候群がある人々と家族を通して考える 遺伝看護の視点と取組み2014

    • Author(s)
      中込さと子
    • Organizer
      日本家族看護学会 第21回学術集会
    • Place of Presentation
      川崎医療福祉大学(岡山県倉敷市)
    • Year and Date
      2014-08-09 – 2014-08-10
    • Related Report
      2014 Research-status Report
    • Invited

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Published: 2014-07-25   Modified: 2019-07-29  

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