Establishment of support for hemophilia carrier in genetic risk communication system
| Project/Area Number |
17K12290
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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 |
Lifelong developmental nursing
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| Research Institution | Nihon Fukushi University (2019)
The Japanese Red Cross Hiroshima College of Nursing (2017-2018) |
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Principal Investigator |
FUJII Tomie 日本福祉大学, 看護実践研究センター, 客員研究所員 (50325164)
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| Project Period (FY) |
2017-04-01 – 2020-03-31
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| Project Status |
Completed (Fiscal Year 2019)
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| Budget Amount *help |
¥3,380,000 (Direct Cost: ¥2,600,000、Indirect Cost: ¥780,000)
Fiscal Year 2019: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
Fiscal Year 2018: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2017: ¥1,690,000 (Direct Cost: ¥1,300,000、Indirect Cost: ¥390,000)
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| Keywords | 血友病 / 保因者 / 遺伝学的リスク / 遺伝カウンセリング / リスクコミュニケーション / 遺伝 / 遺伝学 / 看護学 |
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| Outline of Final Research Achievements |
In a qualitative study, twenty participants were mothers with daughters who have the possibility of being HCs. They included 14 mothers who had already provided risk communication (RC) to their daughters, five who had not yet provided RC but who intended to do so, and one with no intention of providing RC. Mothers who had already provided RC included those who were not troubled and those who experienced psychological difficulties regarding the RC. Participants who had not provided RC experienced difficulties with ‘not knowing what to do’ and feelings of ‘anxiety due to uncertainty’.
In a questionnaire study, the population of questionnaire respondents in the Hem group and the MG group were 66/200 and 53/114, respectively. Both groups answered that the most consultation was “whether or not their daughters were HC”. The MG group was more experienced concerning genetic counseling than the Hem group (47.2% vs 22.7%).
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| Academic Significance and Societal Importance of the Research Achievements |
血友病保因者（HC）は遺伝学的リスクと幾人かは出血リスクを抱えることから、特に出産時の大量出血が危惧される。そのため妊娠したHCは専門的機関で管理されることが望ましい。また、HCの遺伝学的リスクは心理的負担をもたらす。しかしながら我が国のHC支援は極めて乏しい。本成果はHC支援の必要性及び遺伝カウンセリングの課題を明らかにした。今後、HCへの医療支援を構築するために必要な根拠を示す。
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Report
(4 results)
Research Products
(4 results)
