Department of Obstetrics and Gynecology, Leiden University Medical Center, Leiden, The Netherlands
Department of Neonatology, Amalia Children's Hospital, Radboud University Medical Center, Nijmegen, The Netherlands.
Arch Dis Child Fetal Neonatal Ed. 2024 Feb 19;109(2):196-201. doi: 10.1136/archdischild-2023-325997.
A shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience the consequences of the decision made, but information about their perspectives on prenatal decisions is lacking. Therefore, this study aims to describe their perspectives on what is important in decision-making at the limit of viability.
Semi-structured focus group discussions were conducted, recorded and transcribed verbatim. The data were independently analysed by two researchers in Atlas.ti.
Four focus groups were conducted in the Netherlands, with five to six participants each, born between 24 and 30 weeks gestation in the period between 1965 and 2002. Considering their personal life experiences and how their extremely premature birth affected their families, the participants reflected on decision-making at the limit of viability. Various considerations were discussed and summarised into the following themes: anticipated parental regret, the wish to look at the baby directly after birth, to give the infant a chance at survival, quality of life, long-term outcomes for the infant and the family, and religious or spiritual considerations.
Insights into the perspectives of adults born extremely premature deepened our understanding of values considered in decision-making at the limit of viability. Results point out the need for a more individualised prediction of the prognosis and more extensive information on the lifelong impact of an extremely premature birth on both the infant and the family. This could help future parents and healthcare professionals in value-laden decision-making.
在极早产儿的生存极限情况下，推荐采用共享决策（SDM）方法，以父母的价值观为指导。极早产儿会经历决策带来的后果，但缺乏关于他们对产前决策观点的信息。因此，本研究旨在描述他们对生存极限情况下决策的重要因素的看法。
进行了半结构式焦点小组讨论，录音并逐字记录。两位研究人员使用 Atlas.ti 独立分析数据。
在荷兰进行了四个焦点小组，每组有五到六名参与者，他们出生于 1965 年至 2002 年期间，妊娠 24 至 30 周。考虑到他们的个人生活经历以及极早产对他们家庭的影响，参与者对生存极限情况下的决策进行了反思。讨论了各种考虑因素，并总结为以下主题：预期的父母遗憾、希望在出生后直接看到婴儿、给婴儿生存的机会、生活质量、婴儿和家庭的长期结局，以及宗教或精神方面的考虑。
深入了解极度早产儿的观点，加深了我们对生存极限情况下决策中考虑因素的理解。研究结果指出，需要更个体化地预测预后，并更广泛地了解极早产对婴儿和家庭的终身影响，这有助于未来的父母和医疗保健专业人员在有价值的决策中做出决策。
