Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents.
Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents.
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小儿癌症支持性护理需求未得到满足的亲身经历：中国儿童及其父母的视角
DOI：
10.1016/j.ijnss.2022.09.001
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发表时间：
2022-10
影响因子：
3.8
通讯作者：
Duan, Mingxia
中科院分区：
文献类型：
--
作者：
Cheng, Lei;Yu, Ling;Huang, Haiying;Duan, Mingxia
未满足的支持性护理需求（SCN）影响儿科癌症患者及其父母。本研究旨在从中国癌症儿童及其父母的角度，通过生活经验来探讨未满足的SCN。本研究的资料采面对面半结构式访谈法。参与者于2020年10月至2021年12月从中国三个城市（上海，广州和合肥）的儿童医院的肿瘤科招募。使用Colaizzi的七步现象学分析方法分析数据。8名儿童癌症患者和24名父母参加了这项研究。四个主题和八个次主题（儿童和父母的观点）产生：1）满足癌症轨迹沿着的持续需求（你能告诉我接下来会发生什么吗？我们的需求正在增长）; 2）以家庭为中心进行沟通（他们只和我的父母说话;让每个家庭成员都有发言权）; 3）提供治疗以外的护理（我比我的身体大[孩子们对情绪巩固和预后信息的需求];有些事情是无法治疗的）; 4）获得社区的支持（我不是怪物[孩子们对被区别对待感到不满];我们希望与我们附近的资源建立联系）。这项研究从中国癌症儿童及其父母的角度揭示了多个未满足的SCN。研究结果呼吁在治疗之外提供全面和深入的支持性护理，在儿科癌症护理中整合家庭成员的声音，并在中国医疗保健系统中建立协调的儿科癌症支持机制。
Unmet supportive care needs(SCNs) impact pediatric cancer patients and their parents. This study aimed to explore the unmet SCNs from the perspective of Chinese children with cancer and their parents through lived experiences. The data of this study was collected using face-to-face semi-structured interviews. The participants were recruited from the oncology units of three children’s hospitals in China’s cities (Shanghai, Guangzhou, and Hefei) from October 2020 to December 2021. Data were analyzed using Colaizzi’s seven-step phenomenological analysis method. Eight pediatric cancer patients and twenty-four parents were enrolled in the study. Four main themes and eight subthemes (both children’s and parent’s perspectives) were generated: 1) meeting the ongoing needs along the cancer trajectory (can you tell me what comes next; our needs are growing); 2) communicating with a family focus (they only talk to my parents; let each family member have a voice); 3) providing care beyond the treatment (I am bigger than my body [the children’s needs for emotional consolidation and information about their prognosis]; there are things beyond treatment); 4) getting support from the community (I am not a monster [the children were unhappy about being treated differently]; we want to connect with the resources near us). This study revealed multiple unmet SCNs from the perspective of Chinese children with cancer and their parents. The findings call for comprehensive and in-depth supportive care beyond treatment, integration of the family member voice in pediatric cancer care, and a coordinated pediatric cancer support mechanism in the Chinese healthcare system.
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DOI：
10.1007/s00520-016-3501-y
发表时间：
2017-04
期刊：
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
影响因子：
--
作者：
Loeffen EAH;Kremer LCM;Mulder RL;Font-Gonzalez A;Dupuis LL;Sung L;Robinson PD;van de Wetering MD;Tissing WJE
通讯作者：
Tissing WJE
影响因子：
3.6
作者：
He SW;Xiong YE;Zhu LH;Lv B;Gao XR;Xiong H;Wang H;Shi HR;Latour JM
通讯作者：
Latour JM
DOI：
10.1016/j.pedn.2018.11.003
发表时间：
2019-01-01
影响因子：
2.4
作者：
Lyu, Qi-Yuan;Wong, Frances Kam Yuet;Zhou, Xue-Zhen
通讯作者：
Zhou, Xue-Zhen
影响因子：
2
作者：
Sandelowski, Margarete
通讯作者：
Sandelowski, Margarete
患者和父母对儿童癌症的支持性护理的看法。
DOI：
10.1007/s00520-017-3723-7
发表时间：
2017-10
期刊：
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
影响因子：
--
作者：
Tenniglo LJA;Loeffen EAH;Kremer LCM;Font-Gonzalez A;Mulder RL;Postma A;Naafs-Wilstra MC;Grootenhuis MA;van de Wetering MD;Tissing WJE
通讯作者：
Tissing WJE