Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families.

We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD.

Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their “gut feeling” to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed.

This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

被诊断为胎儿或新生儿患有严重、危及生命的冠心病的父母在终止妊娠、姑息治疗或手术之间面临着复杂而紧张的决定。了解父母如何做出最初的治疗决定对于制定干预措施以改善对这些家庭的咨询至关重要。

我们在美利坚合众国的四个学术医疗中心开展了焦点小组讨论，其中有目的的样本父母选择终止妊娠、姑息治疗或手术治疗诊断为严重冠心病的胎儿或新生儿。

对 56 位家长进行了 10 个焦点小组（M年龄= 34 岁；80% 女性；89% 白色）。结果围绕三个领域构建：决策方法；价值观和信念；和决策挑战。父母们讨论了做出决定的不同方法，从依靠他们的“直觉”到需要统计数据和概率。宗教和精神信仰常常指导不终止妊娠的决定。生活质量是一个重要的考虑因素，包括每种选择将如何影响孩子（例如，疼痛或不适、认知和身体能力）及其家庭（例如，照顾其他孩子、婚姻和职业）。父母报告说，临床医生的选择沟通不一致，以及与做出决定的时间限制和痛苦时处理信息的困难有关的挑战。

这项研究提供了重要的见解，可用于设计干预措施，以改善临床实践中的决策支持和以家庭为中心的护理。