Abstract:

Objective To understand the psychological feelings of parents of children with congenital biliaryatresia，and to provide the basis for the treatment and rehabilitation of such diseases. Methods Convenience sampling method selected 50 parents of children with congenital biliary atresia who were hospitalized in Renji Hospital Affiliated to Shanghai Jiaotong University School of Medicine as the research objects，and the Chinese version of the parent experience of child illness（PECI）was used to investigate and analyze the results of the survey. Results The scores of parents' perception frequency of children with congenital biliary atresia from high to low were guilt and worry〔（30.8±7.4）scores〕，unknown sadness and anger〔（19.3±6.4）scores〕，emotions（support，comfort） 〔（12.7±3.7）scores〕，long-term uncertainty〔（10.6±4.3）scores〕. The parents of children with biliary atresia with a monthly income of 3 000 yuan and below felt more guilty and worried than those with an income of more than 3 000 yuan. The difference was statistically significant（P ＜ 0.05）. The parents of children with biliary atresia who lived in the north of the Qinling Mountains-Huaihe line had a statistically significant difference in theirfeelings of emotion（support，comfort）than the parents who lived in the south of the Qinling Mountains-Huaihe line （P ＜ 0.05）. Conclusion In clinical work，medical staff should pay attention to the guilt and worry needs of the parents of children，and at the same time pay attention to the differences in the needs between different groups， especially the characteristics of monthly income and living area，so as to enhance the confidence of parents in caring for children and the ability to promote the rehabilitation of children with disease. 

Key words:

Congenital biliary atresia , Sick child , Parents of sick child , Psychological feeling, Parent experience of child illness

摘要：

目的 了解先天性胆道闭锁患儿父母的心理感受，为该类疾病的治疗与康复提供依据。方法 便利抽样法选取上海交通大学医学院附属仁济医院住院的 50 例先天性胆道闭锁患儿父母为研究对象，采用中文版患儿家属感受量表（parent experience of child illness，PECI）对其进行调查。结果 先天性胆道闭锁患儿父母感知频率的得分由高到低依次是内疚和担心〔（30.8±7.4）分〕、未知的悲哀和愤怒〔（19.3±6.4）分〕、情绪（支持、安慰）〔（12.7±3.7）分〕、长期不确定性〔（10.6±4.3）分〕。其中月收入在 3 000 元及其以下的胆道闭锁患儿父母对内疚和担心的感受比收入大于 3 000 元的父母感受差异有统计学意义（P ＜ 0.05）。居住在秦岭 - 淮河线以北的胆道闭锁患儿父母对情绪（支持、安慰）的感受比居住在秦岭 -淮河线以南的父母感受差异有统计学意义（P ＜ 0.05）。结论 临床工作中，医护人员需要关注患儿父母内疚和担心方面的需求，同时关注各个不同群体之间的需求差异，尤其是月收入和居住地域的特征，以增强父母护理患儿的信心与能力，促进患儿疾病的康复。

关键词:

先天性胆道闭锁 , 患儿 , 患儿父母 , 心理感受 , 患儿家属感受量表