Bereaved Parents' Perceptions of Infant Suffering in the NICU.

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.