以家庭为中心的癌症患儿多症状管理模式的构建及干预：基于症状管理理论的实证研究

Cancer affects the health of children worldwide. With the continuous development of science and medical technology, although the survival rates of children with cancer have increased significantly, the situation that children suffering from physical, psychological symptoms and adverse reactions during the treatment and rehabilitation have not got the corresponding attention and action. We propose to focus on the "symptoms suffering and management “ that facing by cancer children and their parents, A mixed research design will be applied in this study. Combining with "family-centered care" model and using symptom management theory as framework, Firstly, qualitative method will be applied to explore the symptom suffering experience and needs of children with cancer and their parents, Secondly, the longitudinal quantitative study will be conducted to describe and analyze the change trajectories of multiple symptoms in different treatment stages of the children with cancer by latent transition analysis (LTA). Thirdly, literature review, expert individual interview, Delphi expert consultation method will be applied to construct and determine the family-centered multi-symptom management model in children with cancer and its relevant information platform will be developed. Finally, once this management model has been pilot tested, a longitudinal study will be conducted to evaluate the efficacy of this model intervention. The results of the study will help to improve the level of disease management and quality of life of children with cancer, and provide important implication for symptom management of other cancer populations, to promote the rapid development of symptom management in cancer nursing finally.

癌症影响了全球儿童的健康。尽管随着科学技术和医疗水平的发展，肿瘤患儿的生存率大幅提升，但对于治疗及康复过程中患儿遭受的身体、心理的多种不良反应及症状困扰未得到同样的关注和重视。本课题拟聚焦于癌症患儿及父母共同面对的 “症状困扰及管理问题”， 采用质性与量性相结合的混合研究设计，结合“以家庭为中心”的理念，以症状管理理论为理论基础，首先对患儿的多种症状感受及需求进行质性探索；进而进行纵向调查，采用潜在转变模型（LTA）分析不同治疗阶段多症状组别的变化轨迹；在此基础上，结合文献回顾、个体访谈、专家咨询等方法构建癌症患儿多症状管理模式及干预方案，并进行相关信息平台的程序开发；最后在完成干预方案可行性检验后，采用随机对照研究对模式干预的有效性进行纵向验证分析。研究结果有助于提高癌症儿童的症状管理水平和生活质量，同时为其他癌症人群的症状管理提供借鉴和参考，推动癌症照护领域症状管理的快速发展。

癌症是影响儿童健康的严重疾病之一，尽管癌症患儿的生存率逐步提升，治疗过程中所遭受的多种不适和症状困扰亟需得到关注和重视。本研究关注于癌症患儿及父母共同面对的多症状困扰及管理，首先对患儿父母不适症状的照护体验及需求进行探索，父母在过程中不断学习成长，存在信息需求、交流需求及心理支持需求；其次全面描绘了患儿放化疗期间的症状发生及变化，采用以个体为中心的高级统计方法发展混合模型GMM探索了患儿化疗周期内多症状的变化轨迹。研究显示患儿在放化疗期间经历多种不适症状困扰，患儿在化疗周期内经历的症状变化轨迹存在显著的异质性，为实现基于个体的精准症状评估和管理提供了现实依据；在此基础上以症状管理理论为指导，结合专家访谈及专家会议法构建了基于移动信息平台的癌症患儿多症状管理及支持方案并开发了“童smile”微信小程序，该小程序主要模块包括信息支持、症状评估及针对性信息推送以及患儿父母互动及向医护人员提问等，确立了基于微信小程序的癌症儿童多症状管理及支持方案；最后在对该小程序可用性进行了检验，并采用小样本类实验性研究设计初步探索了基于“童smile”小程序的癌症儿童多症状管理及支持方案的有效性，结果显示该干预可以提高癌症患儿父母症状照护知识，在降低父母不良情绪及护理负担未显示有统计学意义，可能与研究样本量小且干预时间较短有关，还需要进一步观察和验证。本研究结果在一定程度上满足了患儿及父母的照护需求，提高了父母症状管理的参与度，对癌症患儿症状评估管理的科学化、规范化具有一定的参考价值，同时结合移动信息技术进行癌症症状管理进行了探索，为该领域的研究及实践提供了借鉴和参考。