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Parental experiences of uncertainty following an abnormal fetal anomaly scan: Insights using Han’s taxonomy of uncertainty
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-07-07 , DOI: 10.1002/jgc4.1311
Jennifer Hammond 1, 2 , Jasmijn E Klapwijk 3 , Melissa Hill 1, 2 , Stina Lou 4 , Kelly E Ormond 5 , Karin E M Diderich 3 , Sam Riedijk 3 , Celine Lewis 1, 6
Affiliation  

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.

中文翻译:

异常胎儿异常扫描后父母的不确定性体验:使用韩氏不确定性分类的见解

对于许多准父母来说,怀孕期间的不确定性始于在常规胎儿异常扫描中发现异常时。这之后可能会进行大量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遇到结构异常后如何看待和管理不确定性。Han 的不确定性分类法被用作识别和理解所经历的不同类型不确定性的框架。在英国(n  = 8 名女性和n  = 1 名男性伴侣)和荷兰(n = 7 名女性)与在胎儿扫描后经历不确定怀孕的参与者。使用主题分析对数据进行分析,并将父母所经历的不确定性与汉族分类学的维度(来源、问题和轨迹)进行映射。参与者的不确定性体验与汉族分类学的所有维度和子类别相关,表明其在产前环境中的适用性。不确定性的来源包括接收到有关异常的概率或模棱两可的信息,或复杂且难以理解的信息。包括的不确定性问题是科学问题——例如没有进一步信息的可能诊断,个人问题——例如不确定性的情绪影响,和实用——例如关于医疗程序和护理的实际方面的信息有限。此外,参与者描述了帮助他们管理不确定性的因素。这包括积极的应对策略,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,例如使用积极和希望。基于这些发现,已经为医疗保健专业人员提出了一些建议,以尽量减少不确定性并帮助患者应对不确定性。
更新日期:2020-07-07
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