川崎病并发巨大冠状动脉瘤患儿父母居家照护体验的质性研究

Home care experience of parents caring for children with Kawasaki disease complicated with giant coronary aneurysm:a qualitative research

目的:探讨川崎病并发巨大冠状动脉瘤患儿父母居家照护的真实体验,为制订针对性干预措施提供参考。方法:采用质性研究中的现象学研究法,对10例川崎病并发巨大冠状动脉瘤患儿父母进行半结构式访谈,并运用Colaizzi 7步分析法分析资料提炼主题。结果:川崎病并发巨大冠状动脉瘤患儿父母的照护体验可归纳为4个主题:不断经历负性情绪;家庭照护知识缺乏;承受巨大的照护负担;迫切渴望支持力量。结论:川崎病并发巨大冠状动脉瘤患儿父母在照护患儿的过程中对患儿疾病管理、家庭照护等方面存在诸多困难,且承受较大的心理负担,医护人员应重视患儿父母的心理状况及相关问题,对其提供有效的干预措施,促进患儿康复,提高家庭的生命质量。

Objective To explore the real experience of parents caring for children with Kawasaki disease complicated with giant coronary artery aneurysm at home,in order to provide reference for targeted interventions.Methods With phenomenological approaches in qualitative study,semi-structured interviews were conducted among 10 parents whose children with Kawasaki disease complicated with giant coronary artery aneurysm,and Colaizzi's 7-step analysis method was used to analyze the data and extract the theme.Results The care experience of parents were classified into four themes:continued negative emotions;lacked of family care knowledge;bore a huge burden of care;eager for support strength.Conclusions Parents of children with Kawasaki disease complicated with giant coronary artery aneurysm have many difficulties in disease management,family care and other aspects in the process of caring for children.They also bear a greater burden of psychological pressure.Medical workers should pay attention to parent′s psychological status and related problems,and provide effective intervention measures to promote the rehabilitation of children and improve the quality of life of the family.