Lived experiences with unmet supportive care needs in pediatric cancer:Perspective of Chinese children and their parents

癌症患儿及父母对未满足的支持性照护需求的感受

Objective: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.Methods: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 sevenstep phenomenological analysis method.Results: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).Conclusion: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.

目的未满足的支持性照护需求影响癌症患儿及其父母。从中国癌症患儿及其父母的角度探讨其关于未满足的支持性需求的生活体验。方法采用半结构式个人访谈收集资料。于2020年10月至2021年12月,在上海,广州及合肥3所儿童医院的血液肿瘤科及肿瘤外科选取癌症患儿和父母参与研究。使用Colaizzi的七步现象学分析方法对资料进行分析。结果最终8名患儿及24名父母参与了访谈,结果呈现了4个主题和8个子主题(患儿及父母的观点):满足癌症轨迹中持续需求(你能告诉我接下来会发生什么吗;我们的需求在增长);以家庭为中心的沟通(他们只与我的父母交谈;让每个家庭成员都有发言权);提供治疗以外的照护[我比我的身体大(患儿对情感和预后信息的需求);有些事治疗以外的];获得社区的支持[我不是怪物(孩子因受到不同的对待而不满);我们希望链接附近的资源]。结论研究从中国癌症患儿及父母的角度揭示了多种未满足的支持性照护需求,提示在治疗之外护理人员需要对患儿及父母进行全面而深入的支持性护理,整合家庭成员的声音,且在中国医疗保健系统中应建立协调的儿科癌症支持机制。