先天性肛门直肠畸形患儿母亲照顾体验的质性研究

The Experience of Mothers Taking Care of Children with Congenital Anorectal Malformation:A Qualitative Research

目的深入了解先天性肛门直肠畸形(congenital anorectal malformation,ARM)患儿母亲在照顾期间的体验,以期为制订针对性的干预措施提供参考。方法 2015年11月至2016年2月,采用目的抽样法选择重庆医科大学附属儿童医院胃肠外科收治的11例ARM患儿母亲为研究对象,采用现象学研究方法对其进行半结构式访谈,现场录音,根据Colaizzi的7步分析法对资料进行分析,提炼主题。结果 ARM患儿母亲的照顾体验可归纳为6大主题:沉重的心理负担、巨大的照顾压力、社会角色部分缺失及生活重心转移、担忧孩子未来生活、渴望社会支持、缺乏疾病护理知识。结论护理人员应针对ARM患儿母亲的主要问题采取干预措施,帮助患儿得到更多的社会支持,以提升患儿及其家庭的生活质量。

Objective To deeply understand the experience of mothers taking care of children with congenital anorectal malformation（ARM）,in order to provide references for the targeted interventions.Methods A semi-structured interview was conducted with 11 mothers of children with ARM.Interview content were analyzed by Colaizzi phenomenotogical method,the themes were extracted.Results The mothers＇ experience were classified into 6 themes,including heavy psychological burden; huge care pressure; lack of social roles,life center has been transferred; the worry about the children＇s future life;desire for social support; lack of nursing knowledge. Conclusions Nursing personnel should take targeted interventions to dealing with the main problems to mothers of children with ARM,and help children to get more social support, thus to improve the quality of life for the children and their family.