Bereaved Parents’ Perceptions of Infant Suffering in the NICU

Abstract Background It is challenging to provide supportive intensive care to infants in the NICU, giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions, however it is unknown how parents come to believe that their infant may be suffering. Aim To examine bereaved parents’ perceptions of infant suffering in the NICU Design Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Setting/participants Parents whose infant died in a large, Midwestern level IV regional referral NICU from July 2009-July 2014 were invited to participate. 30 mothers and 16 fathers from 31 families (31/249) participated in telephone interviews between 3 months and 5 years after their infant’s death. Results Four themes emerged from the qualitative analysis: (a) presence/absence of suffering, (b) indicators of suffering, (c) temporal components of suffering (trajectory), and (d) influence of perceived suffering on parents, infants, and clinical decision-making. Conclusions Parents used signs exhibited by infants, as well as information they received from the healthcare team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.