实体肿瘤儿童和青少年终末期真实体验的质性研究  

Qualitative study on lived experience of terminally ill children with solid tumors

作　　者：吕丹尼 诸纪华[2] 凌云[2] 盛美君[3] 郑丽丽[1] 陈丽骊[1] 高旸 戴俊良 林楠 Lv Danni;Zhu Jihua;Ling Yun;Sheng Meijun;Zheng Lili;Chen Lili;Gao Yang;Dai Junliang;Lin Nan(Department of Oncology Surgery,Children′s Hospital of Zhejiang University School of Medicine,Hangzhou 310052,China)

机构地区：[1]浙江大学医学院附属儿童医院肿瘤外科,浙江杭州310052 [2]浙江大学医学院附属儿童医院护理部,浙江杭州310052 [3]浙江大学医学院附属儿童医院SICU,浙江杭州310052

出　　处：《护理学杂志》2022年第20期9-12,共4页Journal of Nursing Science

基　　金：浙江省教育厅科研项目(Y201941241)。

摘　　要：目的深入了解实体肿瘤临终儿童及青少年对死亡的认知和体验,为更好地开展儿童及青少年安宁疗护提供参考。方法采用现象学研究方法对14例实体肿瘤临终儿童及青少年进行半结构式访谈,并运用类属分析法进行资料的编码、分类、提取主题。结果共提炼出4个主题、8个亚主题:面对死亡的无助(孤独感、失控感),渴望与身后世界建立联系(不愿被遗忘、自我价值感),死亡认知和态度(死亡就是与亲人的分离、感到恐惧但选择勇敢面对),渴求躯体舒适,仍然保持希望(缓解躯体痛苦、实现心愿)。结论实体瘤终末期儿童及青少年面对死亡有强烈的无助感,并渴望与身后世界建立联系。医护人员应关注肿瘤儿童及青少年的临终体验和需求,针对性地提供个性化的安宁疗护服务。Objective To deeply understand the knowledge and experience of death in terminally ill children with solid tumors,and to provide a basis for better development of palliative care services for children.Methods Phenomenological research methods were used to conduct semi-structured interviews with 14 terminally ill children with solid tumors,and categorical analysis was used to code,classify,and extract themes.Results A total of 4 themes and 8 sub-themes were extracted,namely helplessness in the face of death(sub-themes:loneliness,and loss of control),desire to connect with the world behind(not in want of being forgotten,and fulfillment of personal values),death knowledge and attitudes(death is separation with relatives,feeling scared of death but having to face it),desire for physical comfort while still in hope(minimizing physical suffering,and fulfilling wishes).Conclusion Terminally ill children with solid tumors have a strong sense of helplessness in the face of death,and they are eager to establish a connection with the world behind them.Medical staff should pay attention to the end-of-life experience and needs of these children,and take targeted palliative care measures.

关 键 词：儿童 青少年 实体肿瘤 终末期 死亡态度 体验 安宁疗护 舒缓治疗 质性研究 

分 类 号：R473.72[医药卫生—护理学]