Abstract：
Prior work regarding counseling patients about congenital heart defects (CHD) has focused on their perceptions about accurate communication of cardiac anatomy, and the emotional support received from the provider. The objectives of this study were to identify the additional CHD counseling-specific challenges and areas for future intervention, using a practical communication framework. This is a secondary analysis of qualitative data provided by caretakers of infants who received congenital heart surgery from 2019 to 2020 in the Chicagoland area. While the survey in the primary study pertained to barriers in obtaining prenatal diagnosis, respondents with both prenatal and postnatal diagnosis reported challenges to effective counseling. Qualitative data measuring counseling challenges were collected from semi-structured phone interviews. Thematic analysis was performed using an inductive approach. Themes were organized into five domains using SPIKES (Setting, Perception, Invitation, Knowledge, Empathy, and Summarize/Strategy), a previously validated framework to help clinicians effectively break bad news. Among 160 survey respondents, 35 (21.9%) reported a challenge during CHD counseling that they received. In total, 12 challenges were identified and spanned all six SPIKES domains. The three most common challenges were as follows: perception of repeated imaging studies for accurate diagnosis or management (n = 19, Knowledge), the lack of cardiologist presence at the time of initial CHD detection (n = 8, Setting), and insufficient information provided about the CHD diagnosis (n = 7, Knowledge). Patients perceive counseling as a key component of prenatal diagnosis of CHD and identify the challenges that exist at all stages of the counseling process. These findings suggest that effective counseling extends beyond conveying information about anatomy and prognosis.
摘要：
关于先天性心脏病（CHD）患者咨询的先前工作集中在他们对心脏解剖结构的准确沟通的看法上，以及从提供者那里获得的情感支持。本研究的目的是确定其他CHD咨询特定的挑战和未来干预的领域。使用实用的通信框架。这是对芝加哥地区2019年至2020年接受先天性心脏手术的婴儿看护者提供的定性数据的二次分析。虽然初步研究中的调查涉及获得产前诊断的障碍，产前和产后诊断的受访者报告了有效咨询的挑战。从半结构化电话访谈中收集了衡量咨询挑战的定性数据。使用归纳法进行主题分析。使用SPIKES将主题组织为五个域(设置，感知，邀请函,知识,移情,和总结/战略)，一个先前验证的框架，以帮助临床医生有效地打破坏消息。在160名受访者中，35人(21.9%)在接受CHD咨询期间报告了挑战。总的来说,确定了12个挑战，并跨越了所有六个SPIKES领域。三个最常见的挑战如下：感知重复成像研究的准确诊断或管理（n=19，知识），在初始CHD检测时缺乏心脏病专家(n=8，设置)，关于冠心病诊断的信息不足(n=7，知识)。患者认为咨询是CHD产前诊断的关键组成部分，并确定咨询过程各个阶段存在的挑战。这些发现表明，有效的咨询超出了传达有关解剖和预后的信息。
