摘要
目的了解遗传性胆汁淤积性肝病患儿家庭管理方式,为针对性护理干预提供参考。方法采用现象学研究方法,对16名遗传性胆汁淤积性肝病患儿主要照顾者进行深入访谈,采用Colaizzi分析资料和提炼主题。结果共提炼出乐观适应型、茫然忍耐型及消极压抑型家庭管理方式3个主题。结论患儿家庭管理方式不容乐观,医护人员应重视评估其家庭管理方式和需求,给予针对性护理干预措施,改进家庭管理方式,从而改善结局。
Objective To explore family management styles（FMSs）in families of children with hereditary cholestatic liver disease,and to provide reference for targeted intervention.Methods Semi-structured,in-depth interviews were conducted on 16 parents of children with hereditary cholestatic liver disease.Data were analyzed using Colaizzi′s strategy in descriptive phenomenology.Results Three FMSs were identified：thriving and accommodating,uncertain and enduring,floundering and depressive.Conclusion Family management style in families who have children with cholestatic liver disease was not satisfactory.Medical personnel should assess FMS and care needs of families,provide targeted intervention to improve FMS of families and outcomes of children.
作者
陈潇
张玉侠
顾莺
Chen Xiao;Zhang Yuxia;Gu Ying(Children′s Hospital of Fudan University,Shanghai 201102, China)
出处
《护理学杂志》
CSCD
北大核心
2018年第11期90-93,共4页
Journal of Nursing Science
基金
上海市重要薄弱学科建设项目(2015ZB0302)
关键词
儿童
遗传性胆汁淤积性肝病
照顾者
家庭管理方式
质性研究
children
hereditary cholestatic liver disease
caregiver
family management style
qualitative study
