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儿童终末期癌症患者的存在体验和死亡感知:一项阐释性定性研究。

Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study.

机构信息

Nursing Department, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, Zhejiang, China.

Department of Oncological Surgery, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, Zhejiang, China.

出版信息

Palliat Med. 2023 Jun;37(6):866-874. doi: 10.1177/02692163231165100. Epub 2023 Apr 10.

Abstract

BACKGROUND

Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children.

AIM

To advance the understanding of end-of-life experiences and perceptions of death in children with cancer.

DESIGN

Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis.

SETTING/PARTICIPANTS: The study was conducted at the department of oncological surgery, Children's Hospital, Zhejiang University School of Medicine. Ten children aged 8-17 with terminal cancer were included in the study.

RESULTS

Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes).

CONCLUSIONS

Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children's perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.

摘要

背景

探索终末期癌症儿童对死亡的体验和理解对于为他们提供适当的关怀至关重要。然而,大多数研究都集中在父母和医疗保健专业人员的观点上,很少关注儿童的临终体验。

目的

深入了解癌症儿童的临终体验和对死亡的看法。

设计

采用半结构式访谈的解释性定性研究。使用反思性主题分析对数据进行分析。

地点/参与者:本研究在浙江大学医学院附属儿童医院肿瘤外科进行。纳入了 10 名年龄在 8-17 岁的终末期癌症儿童。

结果

从研究结果中确定了四个主要主题(和八个子主题):(1)面对死亡的无助感(孤独、失去控制);(2)与他们离开的世界建立联系的愿望(不愿被遗忘、自我价值感);(3)对死亡的看法和态度(与亲人分离、拥抱死亡);(4)对未来生活的期望(促进舒适、实现愿望)。

结论

终末期癌症儿童孤独感强烈,渴望与他们离开的世界建立联系。儿童对死亡的看法和态度存在差异,这表明医疗保健专业人员应关注他们的体验和需求,为儿童及其家庭提供个性化的姑息治疗服务,以提高他们的生活质量。

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