复发性喉乳头状瘤患儿照护者照护体验的质性研究  

Caregiving experiences among caregivers of children with recurrent laryngeal papilloma:a qualitative study

作　　者：裘妃 盛美君[1] 郑迎 孙旦华[1] 陈晓慰[1] 付勇[1] Qiu Fei;Sheng Meijun;Zheng Ying;Sun Danhua;Chen Xiaowei;Fu Yong(Children's Hospital of Zhejiang University School of Medicine,Hangzhou Zhejiang 310052,China)

机构地区：[1]浙江大学医学院附属儿童医院,浙江杭州310052

出　　处：《护理与康复》2024年第4期1-5,11,共6页Journal of Nursing and Rehabilitation

基　　金：国家自然科学基金面上项目,编号82071038。

摘　　要：目的了解复发性喉乳头状瘤患儿照护者照护过程的真实体验,以期为改善患儿照护者照护体验提供参考。方法运用现象学研究法,对某三级甲等儿童医院14名复发性喉乳头状瘤患儿的主要照护者进行半结构访谈,运用Colaizzi七步分析法对资料进行分析,分类编码,提炼主题。结果复发性喉乳头状瘤患儿照护者的照护体验可归纳为3个主题:心理感受复杂(母亲的质疑与自责感、对患儿未来担忧)、应对方式水平不一(诊断初期依赖网络获取治疗信息、气道危急征象应对疲乏、反复手术生活秩序感被破坏、积极心理调适与角色转变)与照护需求(嗓音康复渠道、缓解经济压力、渴望社会和家庭成员理解)。结论复发性喉乳头状瘤患儿照护者照护不同阶段的体验感有所差异,存在较多负性心理体验,应在不同阶段给予针对性疾病宣教、照护指导与社会支持,以改善照护者照护体验。Objective To gain insight into the real-life experiences of caregivers of children with recurrent laryngeal papilloma,in order to provide reference for improving the nursing experience of children's caregivers.Methods Semi-structured interviews were conducted with 14 caregivers of children with recurrent laryngeal papilloma at a tertiary-level children's hospital using the phenomenological research method.Colaizzi's seven-step analysis method was employed to analyze the data,categorize and code the information,and refine the themes.Results The caregiving experiences of caregivers of children with recurrent laryngeal papilloma can be categorized into three themes:complex psychological feelings(including mothers'doubts and self-blame,the apprehension regarding the children's future prospects),varying levels of coping styles(initial reliance on the internet for treatment information,fatigue in managing critical airway signs,disruption of the sense of life order due to repeated surgery,positive psychological adjustment and role change),and caregiving needs(voice rehabilitation channel,relief of economic stress,and desire for social and family's understanding).Conclusion Caregivers of children with recurrent laryngeal papilloma undergo different experiences across various care stages,with more negative psychological experiences.Therefore,targeted disease education,care guidance,and social support should be provided at different stages to enhance the caregiving experience for caregivers.

关 键 词：复发性 喉乳头状瘤 照护者 照护体验 质性研究 

分 类 号：R473.72[医药卫生—护理学]