97 Parental experiences of decision-making in the grey zones of neonatal intensive care: An international multi-centre mixed methodology study

Background Sharing difficult decisions with parents in the NICU is complex. Grey zones can be defined as clinical scenarios where multiple morally acceptable decisions are possible. Moral distress within clinicians is well recognized in this space, yet little is known about parental moral experiences. Objectives This study sought to understand parental experiences of decision-making (DM) in the NICU and particularly whether moral schism and moral distress were experienced within four NICUs in Australia and Canada. Design/Methods This was a retrospective mixed-methodology phenomenological study. Parents of infants who were admitted to a NICU for at least 3 days between July 2018 and August 2022 and who engaged in complex conversations surrounding difficult care plan decisions were invited to complete a survey that illustrated their experiences of DM. Bereaved families were not contacted until at least 1 year following their child’s death. Demographic patient data was collected by chart review. Qualitative survey data was analyzed using thematic analysis, informed by the concepts of moral distress and moral schism. Descriptive statistics were used for quantitative data. Results 71 parents (80% mothers, 20% fathers) completed the survey. Thematic analysis (see table 1) revealed 5 main themes: (1) decision burdens, (2) internal tensions, (3) actualizing beliefs and values through DM, (4) inauthentic shared DM (SDM) and (5) external factors that shaped DM. Parents reported variable experiences of SDM. Despite DM commonly being described as burdensome, 89% wanted to be involved in SDM; 63% felt included. While parents valued actualization of their beliefs and values, views on who should be the ultimate decision-makers in complex, difficult care decisions varied significantly. Time pressures, frequency of DM, competing interests, and environmental factors positively and negatively added to the internal tensions experienced. Despite being framed as SDM, some parents felt coerced into decisions, consistent with moral distress. The inability to advocate for their child in alignment with their values was a source of regret for some. Conclusion DM in the grey zone can be burdensome. SDM dynamics are complex, reflecting the need for personalized DM. Clinicians need to be aware of various external and internal pressures and tensions experienced by parents. A nuanced approach may mitigate negative moral experiences in clinicians and families alike. Future research can include pursuing interviews with caregivers to better ascertain factors contributing to the experience of difficult DM in the NICU and further delineate a nuanced approach.