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本文引用的文献

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Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review.儿童癌症患者的专科儿童姑息治疗:一项混合方法系统评价。
Palliat Med. 2020 Jun;34(6):731-775. doi: 10.1177/0269216320908490. Epub 2020 May 2.
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The experience of parents living with a child with cancer at the end of life.父母陪伴癌症末期患儿的生活体验。
Eur J Cancer Care (Engl). 2019 Jul;28(4):e13061. doi: 10.1111/ecc.13061. Epub 2019 Apr 24.
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The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers.不确定性的普遍本质——对晚期癌症患者及其非正式照护者的定性研究。
J Cancer Surviv. 2017 Oct;11(5):590-603. doi: 10.1007/s11764-017-0628-x. Epub 2017 Jul 18.
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Cancer Statistics, 2017.《2017 年癌症统计》
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The need for social support provided by the non-profit cancer societies throughout different phases in the cancer trajectory and its integration into public healthcare.
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The family's experience of the child and/or teenager in palliative care: fluctuating between hope and hopelessness in a world changed by losses.该家庭在儿童和/或青少年姑息治疗中的经历:在因失去而改变的世界中,在希望与绝望之间摇摆不定。
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Development of a scale to assess cancer stigma in the non-patient population.开发一种用于评估非患者群体中癌症污名化的量表。
BMC Cancer. 2014 Apr 23;14:285. doi: 10.1186/1471-2407-14-285.
8
Integrative review: parent perspectives on care of their child at the end of life.整合性回顾:家长对临终儿童关怀的观点。
J Pediatr Nurs. 2012 Oct;27(5):514-22. doi: 10.1016/j.pedn.2011.07.008. Epub 2011 Sep 13.
9
Cancer and "playing" with reality: clinical guidance with the help of the intermediate area and disavowal.癌症与对现实的“玩弄”:借助中间区域和否认进行临床指导
Acta Oncol. 2012 Apr;51(4):541-60. doi: 10.3109/0284186X.2011.639389. Epub 2011 Dec 12.
10
Being a parent of a child with cancer throughout the end-of-life course.在孩子生命的最后阶段一直作为患癌孩子的家长。
Oncol Nurs Forum. 2011 Jul;38(4):E260-71. doi: 10.1188/11.ONF.E260-E271.

倾听癌症患儿家长的心声——在生命与终结之间

Listening to Parents of Children With Cancer-Between Life and its end.

作者信息

Manor-Binyamini Iris, Schreiber-Divon Michal

机构信息

Faculty of Medicine, Technion, Haifa, Israel.

Talpiot College of Education, Holon, Israel.

出版信息

J Patient Exp. 2022 Jun 7;9:23743735221106589. doi: 10.1177/23743735221106589. eCollection 2022.

DOI:10.1177/23743735221106589
PMID:35694017
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9185005/
Abstract

This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.

摘要

本研究旨在深入探究癌症患儿临终时其父母的经历和看法。15名患有癌症的儿童(年龄在2至18岁之间)的父母参与了以色列一家医院肿瘤科的半结构化访谈。采用现象学主题分析方法对数据进行分析。研究结果显示:(a)以色列社会重视家庭以及家庭中孩子的文化层面;(b)父母独特的应对方式、保持双重认知;(c)强调希望和支持是父母在孩子患晚期癌症临终时应对能力的必要组成部分。对于治疗患癌症临终儿童及其家庭的专业人员,可以提出一些重要的实用建议。首先,理解面临癌症临终的儿童的父母所形成的“双重认知”。其次,让医护人员靠近病床具有重要意义,也就是说,对医护人员进行关于该主题的开放式沟通培训。第三,建议构建能陪伴整个家庭而非仅父母的干预项目。第四,有必要对在儿科肿瘤病房工作并提供姑息治疗的医护团队进行培训,教导他们如何帮助人们坚守希望以及评估临终儿童父母的希望。