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

Abstract

BackgroundGiven that having an infant in the NICU is a morally stressful event for parents and preterm birth rates are increasing worldwide, parent moral distress is a matter of public health. While moral distress in the clinical context is already a widely explored phenomenon, the parent moral distress still remains a largely under-explored complex phenomenon. Methods This is a prospective qualitative study using semi-structured interviews of seventeen parents (mothers) who previously had an infant in the NICU. The study conducted between February 2021 and August 2021. A thematic analysis of the data was performed. Results While parents with infants in the NICU initially needed for having their decisions respected by physicians, they ultimately shew a tolerant attitude towards benevolent medical paternalism. However, many physician-related factors (i.e. uncertainty, discrepancy of opinion, operational behavior, lack of communicative or empathetic behavior, previous malpractice) facilitate parent moral distress. The important role of the family pediatrician in creating parent moral distress is highlighted. The same holds for family/social environment – related factors. Furthermore, the role of parent’s internal factors (especially spiritual/existential core values or beliefs) as well as the role of NICU environment-related factors (such as the image of a long-suffering infant, preventing mothers from providing their own milk for their infants and having a skin-to-skin contact with them) in creating parent moral distress are highlighted. Moral residue no more than mild was found. Moreover, parent moral schisma is emerged as a conceptually distinct from moral distress phenomenon. Last, the findings of this study confirm the relational account of parental moral distress offered by Mooney-Doyle and Ulrich. ConclusionsWhile many findings of the present study are in line with previous studies, our data analysis revealed findings which are little recognized in the available literature. Parents showed tolerant attitudes towards benevolent medical paternalism. No more than mild moral residue has been found. The most relevant categories of variables associated with parent moral distress were a) physician-related (various factors), b) parent-related, c) parent’s context (family or broader social)-related, and d) NICU environment-related. Furthermore, parent moral distress and parent moral schisma are conceptualized as conceptually distinct albeit strictly related or overlapping phenomena. The findings of this study support the relational account of parent moral distress.