Development and validation of Japanese version of the guidelines for the care of children with Prader Willi Syndrome
| Project/Area Number |
24792532
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| Research Category |
Grant-in-Aid for Young Scientists (B)
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| Allocation Type | Multi-year Fund |
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| Research Field |
Lifelong developmental nursing
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| Research Institution | Seinan Jo Gakuin University |
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Principal Investigator |
HARAYAMA Hiroko 西南女学院大学, 保健福祉学部, 助教 (50593571)
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| Project Period (FY) |
2012-04-01 – 2020-03-31
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| Project Status |
Completed (Fiscal Year 2019)
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| Budget Amount *help |
¥1,950,000 (Direct Cost: ¥1,500,000、Indirect Cost: ¥450,000)
Fiscal Year 2014: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
Fiscal Year 2013: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
Fiscal Year 2012: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
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| Keywords | プラダー・ウィリー症候群 / 小児看護 / プラダーウィリー症候群 / プラダ-・ウィリー症候群 / プラダ－ウィリー症候群 / 小児看護学 / ガイドライン作成 |
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| Outline of Final Research Achievements |
We translated "Best Practice Guidelines for Standard of Care in PWS" by the International PWS Organization, which was announced in 2010, into Japanese. It collaborated with Prader-Willi Syndrome Association Japan.
We conducted an English literature review focusing on the family of children with Prader-Willi syndrome. Despite improvements in physical symptoms delayed muscle development, family stress increased with the growth of children with Prader-Willi syndrome. Although the feeding behavior of children with PWS was well known, mental and behavioral problems, including stubbornness, persistence, and temper tantrums, were a source of parental distress. In addition, the problematic behavior changed faster than the parents expected, and the parents were unable to grasp the problem and obtain countermeasures, and consequently, it was difficult to gain the understanding of the people around the PWS child.
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| Academic Significance and Societal Importance of the Research Achievements |
家族が直面する困難さとは、PWS児では、児の行動問題や社会への適応障害そのものだけではなく、周囲の人々や社会全体での、プラダープラダー・ウィリー症候群とその家族の苦しみに対する理解不足が大きな理由となっていることが、本研究で明らかとなった。プラダー・ウィリー症候群児の家族に特有の困難さに対処するには、社会全体で、医療・看護・ヘルスケア・教育・職域等、様々な包括的なアプローチが不可欠である。本研究結果を社会に発信できる意義は大きいと考える。
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Report
(9 results)
Research Products
(2 results)
