To better understand parents’ accounts of their prenatal and postnatal experience after prenatal diagnosis of CHD – particularly emotional processing and coping mechanisms – to identify strategies to improve support.

This single-centre, longitudinal qualitative study included pregnant mothers and their support persons seen in Fetal Cardiology Clinic at Vanderbilt Children’s Hospital from May through August 2019 for probable complex CHD. Twenty-seven individuals from 17 families participated in 62 phone interviews during pregnancy and postpartum: 27 conducted after the initial prenatal cardiology consultation, 15 after a follow-up prenatal visit, and 20 after birth. Applied thematic analysis approach was used to code and analyse transcribed interviews. Coding and codebook revisions occurred iteratively; intercoder reliability was >80%.

Patients included mothers (16 [59%]), fathers (8 [30%]), and other support persons (3 [11%]). Initial fetal diagnoses included a range of moderate to severe CHD. Prenatally, parents sought to maintain hope while understanding the diagnosis; planning for the future rather than focusing on day-to-day was more common if prognoses were better. Postnatally, with confirmation of prenatal diagnoses, parents’ sense of control expanded, and they desired more active engagement in clinical decision making.

To enhance effective communication and support, understanding how parents conceptualise hope in relation to diagnosis and how that may evolve over time is critical. Expectant parents whose child has a significant risk of mortality may demonstrate hope by focusing on positivity. As prognostic uncertainty diminishes postpartum, the parental role on the team may shift, requiring clinicians to provide different support.

更好地了解父母在产前诊断出先心病后对产前和产后经历的描述，特别是情绪处理和应对机制，以确定改善支持的策略。

这项单中心纵向定性研究纳入了 2019 年 5 月至 8 月在范德比尔特儿童医院胎儿心脏病诊所就诊的可能患有复杂先心病的孕妇及其支持人员。来自 17 个家庭的 27 名个人在怀孕和产后参与了 62 次电话访谈：27 次在初次产前心脏病咨询后进行，15 次在产前随访后进行，20 次在出生后进行。应用主题分析方法用于编码和分析转录的访谈。编码和密码本的修订迭代进行；内部编码器可靠性 >80%。

患者包括母亲 (16 [59%])、父亲 (8 [30%]) 和其他支持者 (3 [11%])。最初的胎儿诊断包括一系列中度至重度先心病。产前，父母在了解诊断的同时力求保持希望；如果预后较好，则更常见的是规划未来而不是关注日常事务。产后，随着产前诊断的确认，父母的控制感增强，他们希望更积极地参与临床决策。

为了加强有效的沟通和支持，了解父母如何看待与诊断相关的希望以及随着时间的推移这种希望如何演变至关重要。孩子有重大死亡风险的准父母可以通过关注积极性来表现出希望。随着产后预后不确定性的减少，父母在团队中的角色可能会发生变化，需要临床医生提供不同的支持。