Parents’ experiences of uncertainty, (shared) decision-making and moral distress during their infants’ previous hospitalization in the NICU
Creators: name: Voultsos, Polychronis
name: Deligianni, Maria
name: Tsamadou, Eftychia
Publisher: name: Aristotle Biomedical Journal
Year: 2022
Subjects: Neonatal Intensive Care Unit (NICU); Uncertainty; (Shared) Decision-Making; Parental Moral Distress; Moral Schism

description: Introduction: Having an infant hospitalized in the neonatal intensive care unit (NICU) is a stressful event for parents and involves ethically challenging situations. Conceptually distinct but closely related concepts of uncertainty, (shared) decision-making in an ethical dilemma and so-called ‘parental moral distress’ are topics that warrant further exploration. Methods: This was a prospective qualitative study that used semistructured interviews of seventeen parents (mothers) who had previously had an infant in the NICU. The study was conducted between February 2021 and August 2021. A thematic analysis of the data was performed. Results: The interview data analysis revealed factors affecting the mothers’ perceived uncertainty in the NICU context. The role of the family paediatrician was highlighted. Parental moral schisms were conceptualized as a split of the parent’s inner world and moral integrity due to completely inconclusive medical evidence—a phenomenon known as ‘uncertainty distress’. In addition, a ‘perceived parental moral schism’ was a situation where somewhat inconclusive medical evidence is perceived as completely inconclusive because of the parent’s values, emotions and beliefs. Furthermore, participants might have experienced parental moral distress (‘constraint distress’) because they were prevented from touching (caressing) their infants, providing milk for their infants, or prohibiting actions they deeply believed to be wrong. Neonatologists have shown ‘old-fashioned’ or subtle paternalistic attitudes. Importantly, mothers’ initial preferences for parent-centred decision-making finally changed to preferences for medical-team-centred decision-making. Parents’ deeply held spiritual and/or existential values gave rise to their preferences for greater involvement in the decision-making process. Barriers and facilitators of parental decision making emerged from the data analysis. Furthermore, barriers and facilitators of mothers’ trust in NICU physicians emerged from the analysis. Participants experienced guilt even for reasons beyond their plausible control. Participants in this study needed not only empathetic and informative emotional communication with health care providers but also empathetic communication with them. Ultimately, at the time of the interviews, the participants had mild lingering emotional reactions that were partly positive and partly negative. Conclusions: His study highlights the empirical factors associated with the concepts of parental uncertainty, parental decision making, and parents’ involvement in shared decision making. Furthermore, this study provides a better, two-tiered working definition of the term ‘parental moral schism’, which is critical to the phenomenology of the term. While many findings of the present study are in line with the findings of previous studies, some unique findings were revealed in the data analysis.
description: Aristotle Biomedical Journal, Vol 4, No 2 (2022)