Application of an educational program for patient and family in Japan.
Application of an educational program for patient and family in Japan.
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在日本实施针对患者及其家属的教育计划。
DOI：
10.1111/j.1600-0609.1984.tb02597.x
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发表时间：
2009
期刊：
影响因子：
--
通讯作者：
K. Yamada
中科院分区：
文献类型：
--
作者：
M. Inagaki;K. Yamada
血友病患者及家属的教育是血友病综合护理和家庭输液治疗取得最佳效果的重要环节。在我们治疗250多名血友病患者的综合血友病中心，这样的教育项目正在进行。我们正在使用美国国家血友病基金会和世界血友病联合会的计划的修改。我们的单元由133个项目组成，分9个部分进行解释，即基本信息、家庭指导、因子替代治疗、家庭输液治疗、副作用、遗传教育以及骨科、牙科和心理社会学护理。作为协调人的医生或护士会安排一次预先测试，之后会有具体的指导。进行后续测试，以确认测试被正确理解。目前，在125名接受家庭输液治疗的患者和123名家庭成员中，有85人已经完成了他们的教育计划。测试结果非常好：前测每个部分的答案都有60%到80%是正确的，而在后测中，分数是85%到95%。母亲的过度保护或困惑通常会降低家庭的结果。这个教育项目似乎是一个很好的方式，不仅可以帮助血友病患者及其家人应对他的疾病，还可以让最近确诊的患者了解他的疾病。
To obtain the best results from comprehensive care and home infusion treatment of hemophilia education of patients and family members is very important. In our comprehensive hemophilia center where more than 250 hemophiliacs are treated, such an educational program is being carried out. We are using a modification of the program of the National Hemophilia Foundation of the United States and of the World Federation of Hemophilia. Our module consists of 133 items with explanations in nine parts, i.e. basic information, family guidance, factor replacement therapy, home infusion therapy, side effects, genetic education, as well as orthopedic, dental and psycho-sociological care. A doctor or a nurse acting as coordinator arranges a pre-test followed by specific instructions. A follow-up test is carried out to confirm that the test is correctly understood. At present 85 of 125 patients receiving home infusion therapy as well as 123 family members, have finished their educational program. The test results were very good: 60 to 80 percent of the answers in each part of the pre-test were correct and, in the post test an 85 to 95 percent score was recorded. Overprotection by or confusion of the mother tended generally to lower the results of the family. This educational program seems to be an excellent way, not only to help the hemophiliac and his family to cope with his disease, but also to inform the recently diagnosed patient about his disease.