University of Maryland School of Nursing, USA.
The University of Pennsylvania School of Nursing, USA.
Nurs Ethics. 2020 May;27(3):821-837. doi: 10.1177/0969733019878838. Epub 2020 Mar 5.
Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.
The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.
A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness.
To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences.
Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society.
Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness.
Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.
道德困境是护士和其他医疗保健提供者中一个重要且研究充分的现象，但父母的道德困境概念仍不清楚。
本维度分析的目的是描述严重儿科疾病中家庭道德困境的性质。
对从 Scopus、CINAHL 和 PsychInfo 图书馆员辅助系统评价中检索到的文章进行维度分析，重点关注儿童、父母、其他家庭成员和医疗保健提供者如何描述父母的道德困境，无论是通过对父母道德体验的明确描述，还是通过对父母参与儿童严重疾病令人痛苦方面的隐含描述。
为了促进儿童和家庭的最佳利益并将伤害降至最低，需要对严重儿科疾病的道德、存在、情感和精神影响有一个细致入微的理解。本维度分析中使用的案例来自第一作者在费城儿童医院获得伦理委员会批准的研究以及随后发表的研究；或者是从文献和作者的临床经验中改编而来的。
文献中围绕父母道德困境出现了三个维度：一个是内在维度，一个是人际维度，还有一个是精神/存在维度。主旨是父母因为孩子的疾病对他们自己、孩子、家庭、医疗保健提供者、周围社区和社会的关系的影响而经历着关系的慰藉和困扰。
阐明这一概念可以帮助护士和其他专业人员理解、减轻或消除父母道德困境的根源。我们讨论了这个模型如何能够促进未来的经验和概念生物伦理学研究，并为医疗保健提供者在严重儿科疾病期间与家庭接触、合作和照顾提供信息。
父母的道德困境是一个重要而复杂的现象，需要进一步的理论和实证研究。我们提供了一个综合的定义和维度示意图模型，它可以作为未来研究和对话的起点。
