Objective: Decision-making in the neonatal intensive care unit (NICU) is complex. In grey zones (where there are multiple morally acceptable pathways), families and clinicians may disagree about the best plan. While negative moral phenomena (NMP) such as moral distress are well recognised within clinicians, little is known about parental experiences. We sought to understand parental experiences of decision-making, particularly if parents experienced NMP.
Design: This was a mixed-methodology phenomenological study, using surveys. Statistical analysis was used for categorical data and thematic analysis for textual data.
Setting: Four tertiary or quaternary NICUs in Australia and Canada.
Participants: Parents of infants admitted to NICUs between July 2018 and August 2022 who engaged in decision-making in grey zones.
Results: 71 parents (80% mothers) completed the survey. 80% were bereaved.Thematic analysis revealed five themes: (1) decision burdens, (2) internal tensions, (3) actualising beliefs and values through decision-making, (4) inauthentic shared decision-making (SDM) and (5) external factors that shaped decision-making.Parents reported variable experiences of SDM. Despite decisions being described as burdensome, 89% wanted to be very involved in SDM, while 63% felt included. Actualisation of beliefs and values was important. Time pressures, competing interests and environmental factors influenced internal tensions experienced. Despite framing as SDM, some parents reported feeling coerced and experiences consistent with NMP.
Conclusion: Some parents do experience significant NMP during SDM in the grey zones of the NICU. Clinician awareness of NMP and their antecedents may enhance communication and the SDM process in this challenging setting.
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