University of Utah Graduate Program in Genetic Counseling, Salt Lake City, Utah, USA.
Certified Genetic Counselor, GeneScreen Counseling, Bernardsville, New Jersey, USA.
J Genet Couns. 2023 Aug;32(4):857-869. doi: 10.1002/jgc4.1694. Epub 2023 Feb 26.
Difficult news has been described as any news that adversely and seriously affects an individual's view of their future. Research in oncology genetic counseling demonstrated that individuals do not prefer in-person or telephone delivery of their genetic test results. However, in the prenatal setting, there is limited research examining how patients prefer news related to their pregnancies be disclosed. This study aimed to assess the experiences and preferences of prenatal patients who received difficult news by telephone. A semi-structured interview guide was developed to assess patients' personal definitions of difficult news and their experiences receiving the news by telephone. Fifteen patients seen prenatally by a genetic counselor were interviewed. Interviews were transcribed and consensus-coded, using inductive content analysis to identify several themes. The most common definition of difficult news included unexpected, life-changing, or devastating information. Participants described aspects of their experience and strategies employed by their genetic counselor that was helpful when receiving the news, which was found to align with the SPIKES protocol, a six-step process of delivering difficult news to patients. Additional techniques that participants identified as beneficial and satisfactory included the genetic counselor's use of empathy, non-directiveness, and continuity and coordination of care. Participants also provided recommendations for improvement, including a discussion of the mode of result disclosure during pretest counseling, an option to follow up with their genetic counselor, personalized resources, and a summary of the results call. The findings of this study demonstrate that a patient-centered approach is preferred by patients who receive difficult news by telephone in the prenatal setting. Patients' identification of beneficial communication techniques and suggestions for improvement can be implemented by any healthcare provider responsible for delivering difficult news to prenatal patients.
坏消息被描述为任何对个人未来产生不利和严重影响的消息。肿瘤遗传学咨询的研究表明，个体不喜欢亲自或通过电话接收他们的基因检测结果。然而，在产前环境中，关于患者更喜欢如何披露与妊娠相关的消息的研究有限。本研究旨在评估通过电话接收困难消息的产前患者的经验和偏好。制定了一份半结构化访谈指南，以评估患者对困难消息的个人定义以及通过电话接收消息的经验。对 15 名由遗传咨询师产前就诊的患者进行了访谈。访谈内容被转录并进行共识编码，采用归纳内容分析法确定了几个主题。困难消息最常见的定义包括意外、改变生活或毁灭性的信息。参与者描述了他们的经历以及遗传咨询师在收到消息时采用的策略，这与 SPIKES 协议一致，SPIKES 协议是向患者传递困难消息的六步过程。参与者还确定了其他有益且令人满意的技术，包括遗传咨询师的同理心、非直接性、护理的连续性和协调性。参与者还提出了改进建议，包括在预测试咨询期间讨论结果披露的模式、选择与遗传咨询师跟进、个性化资源以及结果电话的摘要。本研究的结果表明，在产前环境中通过电话接收困难消息的患者更喜欢以患者为中心的方法。任何负责向产前患者传递困难消息的医疗保健提供者都可以实施患者确定的有益沟通技巧和改进建议。
