Wege Mirjam, von Blanckenburg Pia, Maier Rolf Felix, Knoeppel Carmen, Grunske Albrecht, Seifart Carola
Children's Hospital, University Hospital, Philipps University of Marburg, Marburg, Germany.
Department of Clinical Psychology and Psychotherapy, Philipps University of Marburg, Marburg, Germany.
J Perinat Med. 2023 Jun 20;51(8):1104-1111. doi: 10.1515/jpm-2023-0134. Print 2023 Oct 26.
Little is known about parents' preferences in breaking bad news (BBN) in neonatology. The study was aimed at comparing parents' experiences with their first BBN discussion with a neonatologist/pediatric surgeon to their personal preferences.
We conducted a quantitative survey amongst 54 parents of hospitalized preterm or term infants with severe diseases in two medium-size and one small German neonatal units. Parents answered self-rated questions on how they perceived BBN during their infant's hospital stay, asking for procedure and perception of BBN, their preferences and satisfaction with BBN.
Overall satisfaction with BBN was moderate to high (median (min-max): 8 (1-10) on a 1-10-Likert scale). A compassionate way of disclosure correlated highest with overall satisfaction with BBN. Thorough transmission of information in an easy to understand manner emerged as another crucial point and correlated significantly to satisfaction with BBN, too. The study revealed that it was highly important for parents, that physicians had good knowledge of the infant and the course of his/her disease, which was only met in a minority of cases. Moreover, there was a major discrepancy between expected and observed professional competence of the delivering physicians. Additionally, physicians did not set aside sufficient time for BBN and parents reported a lack of transporting assurance and hope.
In BBN physicians should draw greatest attention to ensure understanding in parents, with good knowledge of child and disease and sufficient time in a trustworthy manner. Physicians should focus on transporting competence, trust and gentleness.
关于新生儿科坏消息告知（BBN）中父母的偏好，人们了解甚少。本研究旨在比较父母首次与新生儿科医生/小儿外科医生进行坏消息告知讨论的经历与他们的个人偏好。
我们对德国两家中型和一家小型新生儿病房中54名患有严重疾病的住院早产儿或足月儿的父母进行了定量调查。父母回答了关于他们在婴儿住院期间如何看待坏消息告知的自评问题，询问了坏消息告知的过程和感受、他们的偏好以及对坏消息告知的满意度。
对坏消息告知的总体满意度为中等至高（在1 - 10李克特量表上的中位数（最小值 - 最大值）：8（1 - 10））。富有同情心的告知方式与坏消息告知的总体满意度相关性最高。以易于理解的方式全面传递信息是另一个关键点，也与坏消息告知的满意度显著相关。研究表明，对父母来说非常重要的是，医生要对婴儿及其疾病进程有充分了解，但只有少数情况能满足这一点。此外，在提供坏消息告知的医生的预期专业能力和实际观察到的专业能力之间存在很大差异。此外，医生没有为坏消息告知留出足够时间，父母表示缺乏安慰和希望。
在坏消息告知中，医生应格外注意确保父母能够理解，要充分了解孩子和疾病，并以值得信赖的方式留出足够时间。医生应注重传递专业能力、信任和温和态度。
