2021 Fiscal Year Final Research Report
Development of contents for building a database for each hereditary disease related to genetic / genomic nursing.
| Project/Area Number |
19K22747
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| Research Category |
Grant-in-Aid for Challenging Research (Exploratory)
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| Allocation Type | Multi-year Fund |
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| Review Section |
Medium-sized Section 58:Society medicine, nursing, and related fields
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| Research Institution | Niigata University |
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Principal Investigator |
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| Project Period (FY) |
2019-06-28 – 2022-03-31
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| Keywords | 遺伝 / ゲノム / 看護 / 遺伝性疾患 / データベース |
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| Outline of Final Research Achievements |
The purpose of this study was to identify the basic contents for the construction of a database by hereditary disease, and to develop and evaluate a model database.
In the first and second years, the nursing domains that would serve as the contents of the database and the categorization of life stages were identified. Based on the collected data, a prototype version of the database was created in the final year, using Charge Syndrome and Down syndrome as model cases.
The prototype version of the database was designed as a system that allows users to search for the salient features of each disorder, Charge syndrome and Down syndrome, by multiplying basic nursing components and age, life stage. We evaluated the database in terms of usability and design.
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| Free Research Field |
ライフサイエンス/生涯発達看護学
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| Academic Significance and Societal Importance of the Research Achievements |
希少疾患に対しての診断、治療については、国内外で研究者参加型による研究が進んでいるが、ケアに関する研究は十分とは言い難い。本研究は、希少疾患の２つ（チャージ症候群、ダウン症候群）をモデルケースとして、対象疾患の看護に役立つ、生活を基盤としたコンテンツをつくり、ウェブ上での運用が可能となるデータベース試作版を作成した。またダウン症候群の試作版では、そのユーザビリティまでを評価している。
本研究は、今後の実装研究に向けた基礎的研究としての学術的意義を持つ。また、希少疾患当事者、家族からも評価を得られる点において、People-Centerd Careの概念の具現化として社会的意義を持つ。
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