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改变身体:严重儿童疾病期间家庭体验的范围综述和主题分析。

Changing bodies: A scoping review and thematic analysis of family experience during serious childhood illness.

机构信息

Dept of Child & Family Health & Methodologies Division, King's College London, London, UK.

School of Education & Sociology,University of Portsmouth Faculty of Humanities and Social Science, Portsmouth, UK.

出版信息

J Child Health Care. 2024 Dec;28(4):914-926. doi: 10.1177/13674935231168683. Epub 2023 Apr 7.

DOI:10.1177/13674935231168683
PMID:37028372
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11607840/
Abstract

This scoping review has investigated experiences of children and parents encountering in-patient treatment for serious childhood illness, including current or potential use of technology as a support mechanism. The research questions were 1. What do children experience during illness and treatment? 2. What do parents experience when their child is seriously ill in hospital? 3. What tech and non-tech interventions support children's experience of in-patient care? The research team identified = 22 relevant studies for review through JSTOR, Web of Science, SCOPUS and Science Direct. A thematic analysis of reviewed studies identified three key themes reflecting our research questions: and . Our findings reflect that information giving, kindness and play are central in hospital experiences. Parent and child needs in hospital are interwoven and under researched. Children reveal themselves as active producers of pseudo-safe spaces who continue to prioritise normal child and adolescent experiences during in-patient care.

摘要

本范围综述调查了儿童和家长在住院治疗严重儿童疾病时的体验,包括当前或潜在使用技术作为支持机制的情况。研究问题是:1. 儿童在患病和治疗期间有什么体验?2. 当孩子在医院病重时,父母有什么体验?3. 哪些技术和非技术干预措施支持儿童的住院护理体验?研究小组通过 JSTOR、Web of Science、SCOPUS 和 Science Direct 确定了 22 项相关研究进行综述。对综述研究的主题分析确定了反映我们研究问题的三个关键主题:儿童的体验、父母的体验和支持性干预措施。我们的研究结果反映出,信息提供、友善和游戏是医院体验的核心。父母和孩子在医院的需求相互交织,且研究不足。儿童表现出自己是伪安全空间的积极创造者,他们在住院期间仍然优先考虑正常的儿童和青少年体验。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/71e3/11607840/2dc622270bc4/10.1177_13674935231168683-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/71e3/11607840/2dc622270bc4/10.1177_13674935231168683-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/71e3/11607840/2dc622270bc4/10.1177_13674935231168683-fig1.jpg

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本文引用的文献

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'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.“应对意外人生——照护者的职业”:照顾患有非恶性危及生命疾病的儿童的父母的经历。
J Child Health Care. 2024 Jun;28(2):348-361. doi: 10.1177/13674935221132920. Epub 2022 Oct 12.
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Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.患有复杂疾病儿童的道德体验:巴西的参与式诠释民族志研究。
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与患有危及生命/限制生命状况的儿童玩耍相关的社会和物理环境因素:一项Q方法研究。
Child Care Health Dev. 2022 Mar;48(2):336-346. doi: 10.1111/cch.12933. Epub 2021 Dec 9.
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Experiences of Pain in Hospitalized Children During Hematopoietic Stem Cell Transplantation Therapy.住院患儿造血干细胞移植治疗期间的疼痛体验。
Qual Health Res. 2021 Oct;31(12):2247-2259. doi: 10.1177/10497323211034161. Epub 2021 Aug 7.
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A qualitative exploration of health-related quality of life and health behaviours in children with sickle cell disease and healthy siblings.对镰状细胞病患儿及其健康兄弟姐妹的健康相关生活质量和健康行为的质性探索。
Psychol Health. 2023 Jan;38(1):125-146. doi: 10.1080/08870446.2021.1955119. Epub 2021 Aug 2.
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Play interventions for paediatric patients in hospital: a scoping review.医院中儿童患者的游戏干预措施:范围综述。
BMJ Open. 2021 Jul 26;11(7):e051957. doi: 10.1136/bmjopen-2021-051957.
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How do children and adolescents experience healthcare professionals? Scoping review and interpretive synthesis.儿童和青少年如何体验医疗保健专业人员?范围审查和解释性综合。
BMJ Open. 2021 Jul 9;11(7):e054368. doi: 10.1136/bmjopen-2021-054368.
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Understanding the impact of 'wish-granting' interventions on the health and well-being of children with life-threatening health conditions and their families: A systematic review.理解“许愿”干预对患有危及生命的健康状况的儿童及其家庭的健康和幸福的影响:系统评价。
J Child Health Care. 2022 Sep;26(3):479-497. doi: 10.1177/13674935211016712. Epub 2021 May 8.
9
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