Cheng Lei, Yu Ling, Huang Haiying, Duan Mingxia
School of Nursing, Fudan University, Shanghai, China.
Hemotology & Oncology Unit, Children's Hospital of Fudan University, Shanghai, China.
Int J Nurs Sci. 2022 Sep 9;9(4):430-437. doi: 10.1016/j.ijnss.2022.09.001. eCollection 2022 Oct.
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.
未满足的支持性护理需求（SCNs）会对儿科癌症患者及其父母产生影响。本研究旨在通过实际经历，从中国癌症患儿及其父母的角度探索未满足的SCNs。
本研究采用面对面半结构化访谈收集数据。研究对象于2020年10月至2021年12月从中国三个城市（上海、广州和合肥）的三家儿童医院的肿瘤科招募。数据采用科莱齐的七步现象学分析方法进行分析。
八名儿科癌症患者和二十四名家长参与了本研究。产生了四个主要主题和八个子主题（包括儿童和家长的视角）：1）满足癌症治疗过程中的持续需求（你能告诉我接下来会怎样；我们的需求在增加）；2）以家庭为重点进行沟通（他们只和我的父母交谈；让每个家庭成员都有发言权）；3）提供治疗之外的护理（我比我的身体更重要[儿童对情感巩固和预后信息的需求]；治疗之外还有其他事情）；4）从社区获得支持（我不是怪物[孩子们对受到不同对待感到不满]；我们想与身边的资源建立联系）。
本研究从中国癌症患儿及其父母的角度揭示了多个未满足的SCNs。研究结果呼吁在治疗之外提供全面深入的支持性护理，在儿科癌症护理中纳入家庭成员的意见，并在中国医疗体系中建立协调一致的儿科癌症支持机制。
