What do parents know about the malformations afflicting the hearts of their children?
What do parents know about the malformations afflicting the hearts of their children?
复制标题
父母对孩子心脏的畸形了解多少？
作者：
M. Chessa;G. De Rosa;M. Pardeo;D. Negura;G. Butera;A. Giamberti;Edoardo Bossone;M. Carminati
传统上，医疗专业人员委托患有慢性病的儿童的父母向儿童传授有关疾病的知识。这种做法假定父母了解这种疾病，并以适合儿童个人的方式传授知识。我们研究的目的是评估心脏缺陷儿童的父母对他们孩子心脏畸形的了解。我们向350个家庭发送了修改后的鲁汶问卷。问卷由148个家庭填写并寄回我们的中心。父母表现出良好的知识的名称和解剖特征的心脏病所遭受的孩子。有孩子服用药物的父母不太了解药物的治疗方案、副作用以及与其他药物或食物的相互作用。只有四分之一的父母知道心内膜炎的定义，尽管几乎五分之二的父母知道不明原因的发烧超过5天是最典型的症状。不到一半的父母知道心内膜炎可能复发。大约五分之二的父母知道他们的孩子参与竞技体育的真实的可能性;但几乎一半的父母无法回答这个问题。我们的父母对疾病的特定方面，治疗和预防措施的知识贫乏可能会产生重大后果。我们的研究结果与一般日常临床实践相关。
Traditionally, medical professionals have entrusted the parents of children with chronic illness with the task of imparting knowledge about the illness to the children. This practice assumes that parents understand the illness, and that they pass on their knowledge in a manner appropriate for the individual child. The aim of our study was to assess the knowledge that parents of children with a cardiac defect have about the malformation in the heart of their child. We sent a modified version of the Leuven questionnaire to 350 families. The questionnaire was filled in and sent back to our centre by 148 families. Parents showed a good knowledge of the name and anatomical characteristics of the cardiac disease suffered by their child. Parents with a child taking drugs were not very knowledgeable about the regime, side effects, and interaction with other drugs or food. Only one-quarter of the parents knew the definition of endocarditis, although almost two-fifths were aware that unexplained fever for more than 5 days was the most typical symptom. Less than half of the parents knew that endocarditis could recur. About two-fifths of parents knew the real possibility of their child being involved in competitive sports; but almost half of parents were unable to answer this question. The poor knowledge about particular aspects of the disease, treatment, and preventive measures revealed by our parents may have major consequences. The results of our study are relevant to general daily clinical practice.