Department of Neonatology, Lille University Hospital, Lille, France.
Cognitive and Affective Sciences, SCALab UMR CNRS 9193, University of Lille, Lille, France.
Acta Paediatr. 2024 May;113(5):992-998. doi: 10.1111/apa.17109. Epub 2024 Jan 17.
This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn.
Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included.
The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret.
Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
本研究旨在探讨经历过新生儿停止和/或撤销生命支持治疗决策过程的父母的体验和意义。
采用解释性现象学分析方法，对来自法国两个地区的三家新生儿重症监护病房的八名家长（七名母亲和五名父亲）进行了面对面的音频记录访谈。
研究结果揭示了父母意义建构过程中的两个悖论：角色矛盾和选择模糊。我们认为，这些悖论以及减轻不确定性的需要，形成了保护性的心理机制，使父母能够应对决策，保持其父母身份，并防止决策后悔。
在新生儿重症监护病房进行共同决策时，应考虑角色矛盾和选择模糊。认识和解决这些矛盾的信念对于告知父母支持实践和专业建议至关重要，同时也增加了关于父母自主权和医生与不确定性关系的伦理讨论。
