North Thames Genomic Laboratory Hub, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Genetic and Genomic Medicine, UCL Great Ormond Street Institute of Child Health, London, UK.
J Genet Couns. 2021 Feb;30(1):198-210. doi: 10.1002/jgc4.1311. Epub 2020 Jul 7.
For a number of prospective parents, uncertainty during pregnancy starts when an anomaly is found during a routine fetal anomaly scan. This may be followed by numerous tests to determine the etiology and nature of the anomaly. In this study, we aimed to understand how prospective parents perceive and manage uncertainty after being confronted with a structural anomaly during their routine ultrasound. Han's taxonomy of uncertainty was used as a framework to identify and understand the different types of uncertainty experienced. Interviews were held in the UK (n = 8 women and n = 1 male partner) and in the Netherlands (n = 7 women) with participants who had experienced uncertainty in their pregnancy after a fetal scan. Data were analyzed using thematic analysis, and the uncertainties experienced by parents were mapped against the dimensions of the Han taxonomy (sources, issues, and locus). Participants' experience of uncertainty was relevant to all dimensions and subcategories of the Han taxonomy, showing its applicability in the prenatal setting. Sources of uncertainty included receiving probabilistic or ambiguous information about the anomaly, or information that was complex and challenging to understand. Issues of uncertainty included were those that were scientific-such as a probable diagnosis with no further information, personal-such as the emotional impact of uncertainty, and practical-such as limited information about medical procedures and practical aspects of care. Additionally, participants described what helped them to manage uncertainty. This included active coping strategies such as searching for information on the Internet, external coping resources such as seeking social support, and internal coping resources such as using positivity and hope. Several recommendations for the healthcare professional to minimize uncertainty and help the patient deal with uncertainty have been proposed based on these findings.
对于许多准父母来说,当在常规胎儿异常扫描中发现异常时,孕期的不确定性就开始了。这可能伴随着许多测试,以确定异常的病因和性质。在这项研究中,我们旨在了解准父母在常规超声检查中发现结构异常后,如何感知和管理不确定性。我们使用 Han 的不确定性分类法作为框架,以识别和理解所经历的不同类型的不确定性。在英国(n=8 名女性和 n=1 名男性伴侣)和荷兰(n=7 名女性)进行了访谈,参与者在胎儿扫描后经历了孕期的不确定性。使用主题分析对数据进行分析,并将父母经历的不确定性与 Han 分类法的维度(来源、问题和位置)相对应。参与者的不确定性体验与 Han 分类法的所有维度和子类别都相关,表明其在产前环境中的适用性。不确定性的来源包括收到关于异常的概率或模糊信息,或信息复杂且难以理解。不确定性的问题包括那些具有科学性的问题,例如没有进一步信息的可能诊断,以及那些具有个人性的问题,例如不确定性的情绪影响,以及那些具有实践性的问题,例如关于医疗程序和护理实践方面的信息有限。此外,参与者还描述了哪些因素有助于他们管理不确定性。这包括积极应对策略,例如在互联网上搜索信息,外部应对资源,例如寻求社会支持,以及内部应对资源,例如使用积极性和希望。根据这些发现,我们提出了一些建议,以帮助医疗保健专业人员减少不确定性并帮助患者应对不确定性。