The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis.
The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis.
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DOI：
10.1177/0269216320967590
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发表时间：
2021-03
影响因子：
4.4
通讯作者：
Harding R
中科院分区：
文献类型：
--
作者：
Marshall S;Fearnley R;Bristowe K;Harding R
虽然父母在童年时期死亡相对常见，但在研究证据中，受父母限制生命的疾病影响的儿童的声音代表性不足。对保健专业人员的指导主要基于专业意见，而不是儿童自己的经验。综合和评价儿童关于父母患有限制生命的疾病的经历的初步研究文献。综合审查和专题综合。在普洛斯彼罗注册（CRD42019094581）。检索PsychINFO、Medline、Embase、Scopus和Web of Science，并辅以灰色文献和系统综述。对发表日期没有限制，研究质量使用Hawker检查表进行评价。研究报告了18岁以下参与者的初步研究结果，其父母患有限制生命的疾病，符合纳入条件。21篇论文符合纳入标准（n = 13定性，n = 8定量），报告了来自高收入国家的n = 18项研究。研究结果显示，在父母罹患限制生命的疾病期间，儿童争取代理权，但往往受到成年人的保护和排斥。与垂死的父母生活在一起的经历对孩子来说是一种情感上的要求，涉及到重大的照顾责任。然而，这些孩子并不是被动的，他们会制定策略来应对这种情况，并希望参与其中。这项审查使人们能够听到受父母限制生命的疾病影响的儿童的声音，并将为制定针对父母和专业人员的指导提供信息。
Although the death of a parent during childhood is relatively commonplace, the voices of children affected by parental life-limiting illness are under-represented in research evidence. Guidance for healthcare professionals is largely based upon professional opinion rather than the experience of children themselves. To synthesise and appraise the literature from primary research with children about their experience of having a parent with a life-limiting illness. Integrative review and thematic synthesis. Registered on PROSPERO (CRD42019094581). PsychINFO, Medline, Embase, Scopus and Web of Science were searched, supplemented by searches of grey literature and systematic reviews. There were no restrictions on publication date, and study quality was appraised using the Hawker checklist. Studies reporting the findings of primary research with participants under 18, whose parent has a life-limiting illness, were eligible for inclusion. Twenty-one papers met the inclusion criteria (n = 13 qualitative; n = 8 quantitative), reporting on n = 18 studies from high-income countries. Findings reveal that throughout parental life-limiting illness, children strive for agency, but are often shielded and excluded by adults. The experience of living with a dying parent is emotionally demanding for children and involves significant caregiving responsibilities. However these children are not passive, developing strategies to cope with the situation and wanting to be involved. The review has enabled the voices of children affected by parental life-limiting illness to be heard and will inform the development of guidance for parents and professionals.
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