2013 Fiscal Year Final Research Report
An investigation into the understanding and adjustment need for parents raring children with rare diseases
| Project/Area Number |
23530938
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Multi-year Fund |
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| Section | 一般 |
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| Research Field |
Clinical psychology
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| Research Institution | Fukuyama University |
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Principal Investigator |
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| Project Period (FY) |
2011 – 2013
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| Keywords | レアシンドローム / プラダウイリー症候群 / 質的研究 |
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| Research Abstract |
This study was designed to investigate the nature of such burden that parents who have children with Prada-Willi syndrome are experiencing every day. Findings suggest that parents of children with rare diseases are not given sufficient information about disease conditions, and helping services are considered patchy in community settings. While families felt being isolated in their community, participating parents support group reflects perceived benefits, especially development and delivery of suggestions for effective treatments for children's problem behaviors. However, it was clear from the discussions that support from psychological professionals about rare conditions may obviously be scant and, therefore, there is an urgent need for establishing support system for rare diseases in community settings.
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