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Background  An understanding of perceptions of parents and health caregivers who assist critically ill neonates is necessary to comprehend their actions and demands. Therefore this study aim to analyze the agreement among parents, nurse technicians and pediatricians regarding the presence and intensity of pain and distress in mechanically ventilated and intubated newborn infants.    Methods  Cross-sectional study comprising 52 infants and 52 trios of adults composed of one parent, one nurse technician, and one pediatrician who all observed the same infant. All infants were intubated and under mechanical ventilation and were not handled during the observations. Each newborn was simultaneously observed by the trio of adults for 1 minute to evaluate the presence of pain and distress. The intensity of pain and distress that the adults believed was felt by the infants was marked in a visual analogical scale. Adults’ agreement about the simultaneous presence of pain and distress in each infant was analyzed by marginal homogeneity and Cochran tests. The agreement about the intensity of pain and distress in each infant was studied by Bland-Altman plot and intraclass correlation coefficient (ICC).    Results  The assessments of pain and distress were heterogeneous in all three investigated groups of adults as determined by the results of a Bland-Altman plot. The presence of distress was more frequently reported compared with pain (marginal heterogeneity, p < 0.01). The pain and distress scores in each adult group were not correlated as shown by ICC [parents, 0.36 (95% CI: 0.01-0.63); nurses 0.47 (0.23-0.66); pediatricians, 0.46 (0.22-0.65)].    Conclusions  Adults systematically underscore pain in comparison to distress in mechanically ventilated newborns, without recognizing the association between them.

Perception of pain and distress in intubated and mechanically ventilated newborn infants by parents and health professionals