成长过渡期肾病综合征患儿疾病体验的质性研究

Disease experience of children with transition nephrotic syndrome:a qualitative study

目的深入了解成长过渡期肾病综合征患儿的疾病体验,为临床制订针对性护理措施和提高患儿应对能力提供参考依据。方法本研究为现象学研究。采用目的抽样法,选取2023年5—6月在苏州大学附属儿童医院就诊或住院的成长过渡期肾病综合征患儿(n=13)进行半结构式访谈,采用Colaizzi 7步分析法进行访谈资料分析并提炼主题。结果成长过渡期肾病综合征患儿的疾病体验可归纳为5个主题:疾病自我管理能力不足(包括疾病认知及管理知识缺乏、自我管理意识薄弱);疾病相关负担过重(包括学业受到影响、药物不良反应多、自我感受负担重);负面评价恐惧增加;亲子关系紧张;成长与收获(包括感受到他人关爱、获得自我成长)。结论成长过渡期肾病综合征患儿经历着成长发育和疾病带来的各种挑战,疾病负担重,心理压力大。医务工作者应密切关注患儿情绪和心理变化,重视其疾病体验,及时给予针对性心理疏导和支持,降低其不良疾病体验。

Objective To gain a deep understanding of the disease experience of children with transition nephrotic syndrome,so as to provide a reference for developing targeted nursing measures and improving coping abilities in clinical practice.Methods This study was a phenomenological study.From May to June 2023,a semi-structured interview was conducted using purposive sampling method to select children with transition nephrotic syndrome(n=13)who received outpatient or inpatient treatment at Children's Hospital of Soochow University.Colaizzi 7-step method was used to analyze interview data and extract themes.Results The disease experience of children with transition nephrotic syndrome were summarized into five themes,including inadequate disease self-management ability(lack of disease cognition and management knowledge,weak self-management awareness),excessive disease-related burden(significant academic impact,frequent adverse drug reactions,and heavy self-perceived burden),increased fear of negative evaluation,tense parent-child relationships,and growth and gain(feeling the care of others and achieving self-growth).Conclusions Children with transition nephrotic syndrome experience various challenges brought by growth,development,and disease,with heavy disease burden and psychological pressure.Medical and nursing staff should closely monitor children's emotional and psychological changes,value their disease experience,provide targeted psychological counseling and support in a timely manner,and reduce their adverse disease experience.