Creation and utilization of a "child-care notebook" for supporting children with congenital anomaly

收集了40份咨询记录(最频繁的来访者访问了20次)，内容是2002年4月至2005年1月期间来医院就诊的母亲和遗传门诊患者的家人。对数据进行了分析和整理。所有患者在每次就诊时都向医生咨询症状、并发症、障碍、病因、治疗或预后。我们创造了一款原创的“育儿笔记本”，以便在遗传诊所实际使用。它是一个A4大小的活页笔记本，内容如下：a.紧急联系方式b.儿童成长记录c.母亲页面d.医务人员页面e.塑料口袋f.关于疾病、残疾和/或检查的说明，有关政府支持系统和教育机构的信息7个患有唐氏综合症或畸形综合征儿童的母亲在解释了研究的主要目的后，发给了7位母亲，如果可能的话，请她们写下孩子的行为或问题。《育儿笔记本》是他们看病时在遗传诊所使用后修改完成的。这是母亲在家中和探视期间和之后由护士写下的，并由母亲保存。利用这个笔记本，研究人员有可能更多地了解母亲和孩子的行为，并同情母亲的评论。这也有助于了解孩子的长期心理状况。从这个意义上说，笔记本是非常有成效的。《托儿笔记本》在妈妈、护士、医生之间起到了交流笔记本的作用，有助于他们前瞻性地了解孩子的发展。它也有效地促进了对孩子的更好的理解，加深了他们对孩子的爱。

Forty records of consultation (the most frequent visitor visited 20 times) were collected about mothers and families of genetic outpatients who had visited the hospital between April 2002 and January 2005. The data were analyzed and organized. All the clients consulted the doctor about the symptoms, complications, disorder, cause, treatment or prognosis on each visit each time. We have created an original "child-care notebook" in order to actually use it in the genetic clinic. It is an A4-sized loose-leaf notebook and the contents are as follows : a. emergency contact details b. Growth records of child c. Mother's page d. Medical staff's page e. Plastic pockets f. Explanation about disorder, disability, and/or examination, Information about governmental support system and educational institutions The "child-care notebook" was given to 7 mothers with Down-syndrome or malformation syndrome child after explaining the main purpose of the research asking them to write the child's behavior or questions to the doctor or nurses if possible. The "child-care notebook" was revised and completed after being utilized in the genetic clinic when they visited the doctor. It was written in by the mother at home and by nurses during and after their visits, and kept by the mother. Utilizing this notebook made it possible for the researchers to understand more about the behavior of the mother and child and to sympathize with the mother's comments. It also helped to realize the long-term psychological condition of the child. In this sense, the notebook was very productive. The "child-care notebook" plays a role as an exchange notebook between mother, nurses and doctor, and it helps for them to understand the child's development in a forward-looking manner. It is also effective to promote better understanding to the child and to deepen their love to the child.