Laboratory of Forensic Medicine & Toxicology (Medical law and Ethics), School of Medicine, Faculty of Health Sciences, Aristotle University of Thessaloniki, University Campus, Thessaloniki, GR, 54124, Greece.
Postgraduate Program on Bioethics, Laboratory of Bioethics, Laboratory of Experimental Surgery and Surgical Research, School of Medicine, Democritus University of Thrace, Dragana, Alexandroupolis, GR, 68100, Greece.
BMC Psychol. 2024 May 24;12(1):291. doi: 10.1186/s40359-024-01793-8.
The hospitalization of infants in the neonatal intensive care unit (NICU) is an ethically challenging situation. A limited number of studies have extended the concept of moral distress to parents of infants hospitalized in the NICU. This topic requires further investigation.
The present prospective qualitative study was conducted from February 2023 to May 2023. Data were collected through semistructured in-depth interviews, which were conducted in-person with fifteen parents of infants who were hospitalized in the NICU at the time of the interviews. Purposive sampling was used. The data were classified and analyzed using thematic analysis.
Three themes emerged from the data analysis performed for this empirical study. One intrapersonal dimension featuring two aspects (one dynamic and one static) and another interpersonal dimension focusing on parental moral distress emerged from the data analysis. Furthermore, seven subthemes emerged across these themes: (1) self-directed negative feelings were experienced by parents due to their inability to fulfill their caregiving/parental roles; (2) intense internal conflict was experienced by parents in response to a moral dilemma that was difficult, which was perceived as irresolvable; (3) objectively unjustified, self-directed negative feelings of guilt or failure were experienced by parents; (4) parents experienced moral distress due to the poor image of the ill infants; (5) inadequate information may predispose parents to experience moral distress (6) neonatologists' caring behaviors were unduly perceived by parents as paternalistic behaviors; (7) reasonable or justified institutional rules were unduly perceived by parents as constraint.
In general, the results of this study support the integrated definition of parental moral distress proposed by Mooney-Doyle and Ulrich. Furthermore, the present study introduces new information. The study distinguishes between the dynamic and static aspects of the intrapersonal dimension of the phenomenon of parental moral distress. Moreover, participants experienced moral distress because they unduly perceived certain situations as causing moral distress. In addition, inadequate information may predispose parents to experience moral distress. The findings of this study may contribute promote family-centered care in the NICU context.
婴儿在新生儿重症监护病房（NICU）住院是一个具有伦理挑战性的情况。少数研究将道德困境的概念扩展到在 NICU 住院的婴儿的父母。这个话题需要进一步调查。
本前瞻性定性研究于 2023 年 2 月至 5 月进行。数据通过半结构化深度访谈收集，访谈时对 15 名在 NICU 住院的婴儿的父母进行了面对面访谈。采用目的抽样。使用主题分析对数据进行分类和分析。
从对这项实证研究进行的数据分析中得出了三个主题。一个是个体维度，包括两个方面（一个动态的，一个静态的），另一个是人际维度，重点是父母的道德困境。此外，在这些主题中出现了七个子主题：（1）父母由于无法履行照顾/父母角色而产生自我导向的负面感受；（2）父母对难以解决的道德困境感到强烈的内心冲突；（3）父母感到不合理的、自我导向的内疚或失败感；（4）父母对生病婴儿的不良形象感到道德困境；（5）父母可能因信息不足而感到道德困境（6）新生儿科医生的关怀行为被父母不当视为家长式行为；（7）合理或合理的制度规则被父母不当视为约束。
总的来说，这项研究的结果支持了 Mooney-Doyle 和 Ulrich 提出的父母道德困境的综合定义。此外，本研究还引入了新的信息。该研究区分了父母道德困境现象的个体维度的动态和静态方面。此外，参与者感到道德困境是因为他们不当认为某些情况导致了道德困境。此外，信息不足可能使父母更容易感到道德困境。本研究的结果可能有助于在 NICU 环境中促进以家庭为中心的护理。
