Bani Marco, Russo Selena, Raggi Erika, Gasperini Serena, Motta Serena, Menni Francesca, Furlan Francesca, Cefalo Graziella, Paci Sabrina, Banderali Giuseppe, Marchisio Paola, Biondi Andrea, Strepparava Maria Grazia
School of Medicine and Surgery, University of Milano-Bicocca, Milan, Italy.
Department of Pediatrics, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy.
Child Care Health Dev. 2023 Nov;49(6):961-971. doi: 10.1111/cch.13105. Epub 2023 Feb 27.
The process of receiving a communication of positivity for metabolic diseases at expanded newborn screening (ENBS) is extremely articulated, involves a variety of actors (parents, maternal and child departments, clinical centres and laboratories) and is open to a variety of outcomes from false positive to true positive cases. Receiving communication of positivity can be highly stressful for parents and requires an adequate communication process to give clear and reliable information without causing excessive worry. This qualitative study describes the parents' experience of receiving a communication of positivity to metabolic diseases at ENBS, and their assessment of the quality of the communication process and steps, with the main aim to identify the process' strengths and weaknesses and to advance tailored recommendations to improve the communication process.
Fourteen in-depth, semi-structured phone interviews were conducted with parents whose children resulted positive to the ENBS. As part of the ENBS communication process, parents received a first phone call communication of positivity and a second in-person communication at metabolic clinical centres (MCC). The framework analysis method was used to organize the data and identify emerging themes.
Parents were largely dissatisfied with the quality and depth of the information received and with the way the healthcare staff delivered the first communication phone call, which failed to create a caring, empathic and safe setting. Many parents tried to reduce the uncertainty by searching online information or consulting with other providers. Nevertheless, the majority of parents described the in-person visit at MCC as clear, welcoming and reassuring.
More efforts are needed to improve the quality of the communication process of the ENBS. Guidelines, recommendations and standard scripts to communicate positivity are needed along with programmes and educational resources to train tailored communication skills.
在扩大新生儿筛查（ENBS）中收到代谢性疾病阳性结果通知的过程极为复杂，涉及多种行为主体（父母、母婴科室、临床中心和实验室），且可能出现从假阳性到真阳性等多种结果。收到阳性结果通知对父母来说可能压力极大，这需要一个适当的沟通流程，以便提供清晰可靠的信息而不会引起过度担忧。这项定性研究描述了父母在ENBS中收到代谢性疾病阳性结果通知的经历，以及他们对沟通流程和步骤质量的评估，主要目的是确定该流程的优点和缺点，并提出针对性建议以改进沟通流程。
对其子女ENBS结果呈阳性的父母进行了14次深入的半结构化电话访谈。作为ENBS沟通流程的一部分，父母先接到一个关于阳性结果的电话通知，然后在代谢临床中心（MCC）进行第二次面对面沟通。采用框架分析法来组织数据并确定新出现的主题。
父母对所获信息的质量和深度以及医护人员进行首次电话沟通的方式大多不满意，这种方式未能营造出关怀、共情和安全的氛围。许多父母试图通过在网上搜索信息或咨询其他医疗服务提供者来减少不确定性。然而，大多数父母表示在MCC的面对面就诊清晰、温馨且令人安心。
需要做出更多努力来提高ENBS沟通流程的质量。需要有传达阳性结果的指南、建议和标准脚本，以及培养针对性沟通技巧的项目和教育资源。
