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

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