Parent moral distress in serious pediatric illness: A dimensional analysis

Abstract

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: 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. Ethical considerations: 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. Findings: 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. Discussion: 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. Conclusion: 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.

Parent Moral Distress From The Perspectives of Mothers With An Infant Previously Hospitalized in The NICU

“…This is the case with participants in our study who declared their negative moral emotions that arose in response to their perceived involvement in a highly undesirable moral situation. Mooney-Doyle and Ulrich who have recently offered an integrated account of parent moral distress put it best in saying: "Moral distress involves the perception one failed, due to internal and external constraints, to behave in the morally right way or compromised one's own moral integrity or values" (Mooney-Doyle and Ulrich, 2020) [9]. Participants in our study felt compromised their core values and beliefs associated with spirituality and their love for human-beings and respect for their existence in the world.…”

“…Mooney-Doyle and Ulrich put it best in saying "parental physical and emotional distress is exhibited in many ways, including fatigue, disrupted sleep, caregiving demands, worry, and employment demands" (Mooney-Doyle and Ulrich, 2020) [9]. There is growing body of literature on mental health of parents with an infant in the NICU (i.e.…”

“…There is growing body of literature on mental health of parents with an infant in the NICU (i.e. Lasiuk, Comeau, & Newburn-Cook, 2013 [10]; Hagen, Iversen, & Svindseth, 2016 [11]; Spinelli et al, 2016 [12]; Roque et al, 2017 [5]; Staver et al, 2019 [8]; Mooney-Doyle and Ulrich, 2020 [9]).…”

“…At any rate, both constraints and uncertainty should be regarded as being at the core of parent moral distress. parent moral distress Mooney-Doyle and Ulrich put it best in saying "moral distress involves the perception one failed, due to internal and external constraints, to behave in the morally right way or compromised one's own moral integrity or values (provoking intense self-directed negative emotions)" [9]. This account of moral distress has been adopted for the purposes of this study.…”

“…Given that preterm birth rates are increasing worldwide (Blencowe et al, 2012 [24]; Liu et al, 2012 [25]), having an infant in the NICU is a morally stressful event for parents and parent moral distress creates negative self-directed emotions, we all need to understand that in the context of neonatal intensive care parent moral distress is a matter of public health. While moral distress in the clinical context is already a widely explored phenomenon, the concept and the dimensions of parent moral distress in the context of neonatal intensive care is a topic which still remains largely underexplored despite the fact that it is a complex phenomenon that has gained increased attention across disciplines (Mooney-Doyle and Ulrich, 2020) [9]. While there is growing body of literature on mental health of parents with an infant in the NICU and moral distress experienced by health professionals within NICUs, there is limited empirical research about the nature and degree of parents' moral distress experienced within the NICU (Prentice et al, 2016) [26].…”