Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer.

中文翻译：

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儿童期癌症期间的交流：对患者观点的系统评价。

有效的沟通在儿童期癌症中具有挑战性，在儿童期癌症中，决策具有不可预测的威胁生命的意义。我们旨在描述患者在儿童期癌症治疗过程中与临床医生交流的经验。对截至2019年4月的定性研究进行了系统的审查。符合条件的研究包括诊断为年龄≤18岁的癌症患者，并报告了他们在治疗儿童癌症期间与临床医生沟通的观点。数据是从初步研究中提取的，用于主题综合。在25个国家的101篇文章中，涉及1870名被诊断患有3至18岁癌症的参与者，我们确定了6个主题：1）变得无形和无能为力（被成人权威所取代和破坏；被背叛和不信任；被忽视的感觉；无助和威吓；由于缺乏信息而被剥夺权力）；2）对未来的恐惧和忧虑（毁灭性的新闻，不确定性，预期和恐惧；触及私密和私人话题而瘫痪）；3）承担责任（压力大，准备不足；平衡外部期望；保护希望）；4）治疗性的医患关系（情感支持和鼓励；经过验证的人格和陪伴关系）；5）信任中的安全（真实和透明；通过意识和理解来准备；通过可靠的专业知识来保证；依靠成年人来提供保护和困难的决策；表达意见和需求时的安全性）；6）授权和果断的代理权（个人知识和选择权；对自己的生活的控制权；伙伴关系和尊重；增强自我管理的能力）。在治疗儿童期癌症期间，当患者感到临床医生正在解决他们的信息和发展需求时，他们会得到尊重，安全和控制感。但是，被认为以父母为中心的沟通可能会失去权力。促进儿童代理和伙伴关系可以改善对患癌症儿童的照料和结果。