PLAIN ENGLISH SUMMARY Ultrasound examinations during pregnancy have led to an increased number of detected heart defects in fetuses. Pregnant women and their partners are often unprepared for these news, and experience several difficulties following the diagnosis. We asked persons with personal experience to participate in group discussions about relevant future research topics. The discussions revealed that future research should investigate supplemental written information or follow-up appointments with health professionals. Researchers were also encouraged to focus their efforts on structures that offer emotional support. The emotional support could be from those that share similar experiences, or additional support from a health professional. The results of this study illustrate the need for researchers to continue their work to test ways to support persons faced with these diagnoses. ABSTRACT Background A prenatal diagnosis of a congenital heart defect in the fetus is a traumatic life event for pregnant women and their partners. Previous research indicates a need for research that takes steps to support these individuals following the diagnosis. Patient and public involvement is a proposed method of identifying relevant research topics, leading to patient-focused research protocols and relevant support interventions.The overarching aim of this study was to gain insights into relevant future research topics among persons faced with a prenatal diagnosis of congenital heart defect in the fetus. Methods One group of parents to prenatally diagnosed children with a congenital heart defect (n = 5) and one group of individuals with experience of termination of a pregnancy following a prenatal diagnosis of a congenital heart defect (n = 5) were purposefully recruited. Each group of representatives was involved in a face-to-face focus group discussion, analyzed through qualitative content analysis. Results The representatives suggested a need for future research that addresses informational support in the forms as supplemental written information or follow-up consultations. Moreover, interventions that offer emotional support were suggested, in the forms of peer support or additional professional psychosocial support. Conclusion Several interventions were suggested by patient representatives, indicating a need for multiple intervention studies to be conducted in the context of a prenatal diagnosis of a congenital heart defect in the fetus. We recommend that future studies test supplemental written information, follow-up consultations, peer support, and additional professionals psychosocial support following the diagnosis.

中文翻译：

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有先天性心脏缺陷产前诊断生活经验的人参与：一项探索性研究，以深入了解未来研究的观点。

简明英语摘要 怀孕期间的超声检查导致检测到的胎儿心脏缺陷数量增加。孕妇及其伴侣通常对这些消息毫无准备，并且在诊断后会遇到一些困难。我们邀请有个人经验的人参加关于未来相关研究主题的小组讨论。讨论表明，未来的研究应该调查补充的书面信息或与卫生专业人员的后续预约。还鼓励研究人员将精力集中在提供情感支持的结构上。情感支持可能来自那些有相似经历的人，或者来自健康专业人士的额外支持。这项研究的结果表明，研究人员需要继续他们的工作，以测试支持面临这些诊断的人的方法。抽象背景 胎儿先天性心脏缺陷的产前诊断是孕妇及其伴侣的创伤性生活事件。先前的研究表明，需要在诊断后采取措施支持这些人的研究。患者和公众参与是一种确定相关研究主题的建议方法，从而导致以患者为中心的研究方案和相关的支持干预措施。本研究的首要目标是深入了解面临前 na 的人的相关未来研究主题胎儿先天性心脏缺陷的诊断。方法 有目的地招募一组产前诊断为先天性心脏缺陷儿童的父母（n = 5）和一组在产前诊断为先天性心脏缺陷后有终止妊娠经验的个体（n = 5）。每组代表都参与了面对面的焦点小组讨论，并通过定性内容分析进行分析。结果 代表们建议未来的研究需要以补充书面信息或后续咨询的形式解决信息支持问题。此外，还提出了以同伴支持或额外的专业心理社会支持的形式提供情感支持的干预措施。结论 患者代表建议了几种干预措施，表明需要在胎儿先天性心脏缺陷的产前诊断背景下进行多项干预研究。我们建议未来的研究在诊断后测试补充书面信息、后续咨询、同伴支持和额外的专业心理社会支持。