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本文引用的文献

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Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.实现以儿童为中心的关怀:对患有危及生命疾病的儿童和青少年的定性访谈研究。
Eur J Pediatr. 2022 Oct;181(10):3739-3752. doi: 10.1007/s00431-022-04566-w. Epub 2022 Aug 12.
2
Day-to-Day Decision Making by Adolescents and Young Adults with Cancer.青少年和青年癌症患者的日常决策。
J Pediatr Hematol Oncol Nurs. 2022 Sep-Oct;39(5):290-303. doi: 10.1177/27527530211068718. Epub 2022 Jan 15.
3
Giving voice to children in research: The power of child-centered constructivist grounded theory methodology.让儿童在研究中发声:以儿童为中心的建构主义扎根理论方法的力量。
Res Nurs Health. 2022 Aug;45(4):488-497. doi: 10.1002/nur.22231. Epub 2022 Apr 28.
4
Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers.癌症相关决策:青少年、青年、照顾者和肿瘤学提供者的视角。
Qual Health Res. 2021 Nov;31(13):2355-2363. doi: 10.1177/10497323211037654. Epub 2021 Aug 12.
5
Exploring illness identity among children and youth living with cancer: A narrative review.探索癌症患儿及青少年的疾病身份认同:一项叙述性综述。
Pediatr Blood Cancer. 2021 Nov;68(11):e29251. doi: 10.1002/pbc.29251. Epub 2021 Jul 24.
6
"I have to do things differently now, but I make it work"-young childhood cancer survivors' experiences of self-management in everyday living.“我现在必须以不同的方式做事,但我让它发挥作用”- 儿童期癌症幸存者日常生活中的自我管理体验。
J Cancer Surviv. 2022 Aug;16(4):728-740. doi: 10.1007/s11764-021-01066-y. Epub 2021 Jun 7.
7
"Can you tell me why you made that choice?": A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant.“你能告诉我你为什么做出那个选择吗?”:一项关于青少年和年轻成人在骨髓移植过程中进行预先护理计划的治疗决策影响的定性研究。
Palliat Med. 2020 Mar;34(3):281-290. doi: 10.1177/0269216319883977. Epub 2019 Oct 29.
8
Adolescent and Young Adult Cancer Patients' Experiences With Treatment Decision-making.青少年和青年癌症患者的治疗决策体验。
Pediatrics. 2019 May;143(5). doi: 10.1542/peds.2018-2800.
9
A 4-Step Framework for Shared Decision-making in Pediatrics.儿科共享决策的四步骤框架。
Pediatrics. 2018 Nov;142(Suppl 3):S149-S156. doi: 10.1542/peds.2018-0516E.
10
Centeredness in Healthcare: A Concept Synthesis of Family-centered Care, Person-centered Care and Child-centered Care.医疗保健中的以……为中心:家庭本位医疗、个人本位医疗和儿童本位医疗的概念综合
J Pediatr Nurs. 2018 Sep-Oct;42:45-56. doi: 10.1016/j.pedn.2018.07.001. Epub 2018 Jul 10.

儿童在长期癌症治疗过程中的认知和态度:一项民族志研究。

Children's cognition and attitudes during long-term cancer treatment: an ethnographic study.

机构信息

School of Nursing and Social Welfare Sciences, Fukui Prefectural University, Fukui, Japan

Department of Pediatrics, Sapporo Medical University School of Medicine, Sapporo, Japan.

出版信息

BMJ Paediatr Open. 2024 Apr 16;8(1):e002405. doi: 10.1136/bmjpo-2023-002405.

DOI:10.1136/bmjpo-2023-002405
PMID:38627059
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11029233/
Abstract

BACKGROUND

Cancer treatment for children is typically long-term and difficult, and the experience is unique for each child. When designing child-centred care, individuals' values and preferences are considered equally important as the clinical evidence; therefore, understanding children's thoughts and attitudes while they receive long-term treatment could offer valuable insights for better clinical practice.

METHODS

We conducted long-term consecutive participatory observations and interviews with seven children, who were hospitalised and receiving cancer treatment for the first time. The daily observational data on those children's discourses, behaviours and interactions with health professionals were systematically collected and thematically examined. The analysis was expanded to explore significant narratives for each child to capture their narrative sequence over time.

RESULTS

The initial analysis identified 685 narrative indexes for all observation data, which were categorised into 21 sub-codes. Those sub-codes were assembled into five main themes by thematic analysis: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life.

CONCLUSION

We observed a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future among children undergoing in-hospital cancer treatment. In addition, the children developed cognitively, affectively and relationally throughout cancer treatment processes. These findings have implications for better clinical practice in child-centred care, including children's participation in shared decision-making in paediatric oncology.

摘要

背景

儿童癌症的治疗通常是长期且困难的,且每个孩子的经历都是独特的。在设计以儿童为中心的护理时,个人的价值观和偏好与临床证据同样重要;因此,了解儿童在接受长期治疗时的想法和态度,可以为更好的临床实践提供有价值的见解。

方法

我们对 7 名首次住院接受癌症治疗的儿童进行了长期连续的参与式观察和访谈。系统地收集了关于这些儿童话语、行为以及与卫生专业人员互动的日常观察数据,并进行了主题分析。分析扩展到探索每个孩子的重要叙述,以捕捉他们随时间的叙述顺序。

结果

初步分析确定了所有观察数据的 685 个叙事索引,这些索引被分为 21 个子码。通过主题分析,这些子码被组合成五个主要主题:与卫生专业人员做出承诺、通过参与了解治疗程序、照顾自己、增加活动范围和过正常生活。

结论

我们观察到接受癌症治疗的儿童对理解癌症、接受治疗和对未来持乐观态度。此外,儿童在癌症治疗过程中在认知、情感和关系方面都有所发展。这些发现对以儿童为中心的护理中的更好的临床实践具有启示意义,包括儿童在儿科肿瘤学中参与共同决策。