儿童结核病患者父母照护体验及需求的质性研究

The lived experience and needs of parents caring for children with tuberculosis: a qualitative study

目的:深入了解儿童结核病患者父母的照护体验及需求,为制定相应的护理支持方案提供依据。方法:采用现象学研究方法,通过目的抽样选取2022年12月至2023年4月上海市公共卫生临床中心结核科13例儿童结核病患者的父母作为研究对象,进行半结构式访谈,收集相关资料。采用Colaizzi现象学7步分析法并借助Nvivo 12软件分析资料提炼主题。结果:13名受访的结核病患儿的父母,10名(76.92%)经历了复杂的情绪反应,8名(61.54%)感知生活状态发生变化,7名(53.85%)认为能够主动调适积极应对,11名(84.62%)渴望专业的支持与帮助。结论:儿童结核病患者的父母存在一定程度的照顾负荷,影响着身心健康。医护人员应为其提供情感、技能、社会等多方面支持,以促进患儿父母的正性照护体验,改善父母及患儿的整体生活质量。

Objective:To deeply understand the care experience and needs of parents caring for children with tuberculosis,and to provide basis for the development of corresponding nursing support programs.Methods:This was a phenomenological study.Purposive sampling was used to select 13 children with tuberculosis in the Tuberculosis Department of Shanghai Public Health Clinical Center from December 2022 to April 2023 as the research objects and semi-structured interviews were conducted to collect relevant data.The Colaizzi phenomenological 7-step analysis method and Nvivo 12 software were used to analyze the data and refine the theme.Results:Among the 13 parents of children with tuberculosis interviewed,10 cases(76.92%)experienced complex emotional reactions,8 cases(61.54%)perceived work life changes,7 cases(53.85%)believed that they could actively adjust and respond positively,and 11 cases(84.62%)were eager for professional support and help.Conclusion:The parents of children with tuberculosis have a certain degree of care burden,which affects their physical and mental health.Medical staff should provide emotional,skill,social and other aspects of support to promote the positive care experience of parents of children with tuberculosis and improve the overall quality of life of parents and children.