Dana-Farber Cancer Institute, Boston, Massachusetts, United States.
Boston Children's Hospital, Boston, Massachusetts, United States.
Pediatr Blood Cancer. 2018 Jun;65(6):e26972. doi: 10.1002/pbc.26972. Epub 2018 Jan 31.
Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP.
We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Interviews sought to elicit perceived communication gaps regarding cancer care and inform D100 development. Following qualitative analysis of interview responses, we developed a three-part D100 conversation tool consisting of a preparatory family worksheet, a conversation guide, and a family summary sheet. We presented the tool during interviews and a focus group with pediatric oncology providers and revised it to incorporate provider input.
Twenty-two stakeholders (six parents, five adolescents, and 11 providers) participated in interviews or a focus group. Parents and patients perceived insufficient anticipatory guidance as the most important communication gap. They also reported sometimes withholding worries and cancer-related beliefs. Meanwhile, oncology providers worried about "opening Pandora's Box" and limited clinical time. Additionally, providers reported employing indirect methods such as surmising to determine families' needs and relying on psychosocial clinicians to engage families around potentially "taboo" issues of emotional coping and spirituality.
Creating a communication occasion (D100), ensuring complementary disciplinary expertise through joint participation by oncologists and psychosocial clinicians, and providing a conversation tool to prompt disclosure by families and facilitate anticipatory guidance may ameliorate existing communication gaps during the ECTP.
在癌症治疗早期（ECTP），家庭的沟通需求可能无法通过当前的治疗方法得到满足。我们试图通过开发一种新型的深入对话来改善这种情况，即家庭与儿科肿瘤医生之间的“第 100 天对话”（D100）。
我们对接受儿童癌症治疗不到 7 个月的父母和患者进行了半结构化访谈。访谈旨在了解癌症治疗方面的沟通差距，并为 D100 的开发提供信息。在对访谈结果进行定性分析后，我们开发了一个三部分的 D100 对话工具，包括一份预备家庭工作表、一份对话指南和一份家庭总结表。我们在访谈和儿科肿瘤学提供者的焦点小组中展示了该工具，并对其进行了修订，以纳入提供者的意见。
22 名利益相关者（6 名父母、5 名青少年和 11 名提供者）参加了访谈或焦点小组。父母和患者认为缺乏预期指导是最重要的沟通差距。他们还报告有时会隐瞒担忧和与癌症相关的信念。与此同时，肿瘤学提供者担心“打开潘多拉的盒子”和临床时间有限。此外，提供者报告说，他们采用了间接方法，如推测，以确定家庭的需求，并依靠心理社会临床医生来处理家庭围绕情绪应对和精神信仰等潜在的“禁忌”问题。
创造一个沟通机会（D100），通过肿瘤学家和心理社会临床医生的联合参与确保互补的专业知识，并提供一个对话工具来促进家庭的披露并促进预期指导，可能会改善 ECTP 期间现有的沟通差距。
