Parental concern and distress about infant pain

Objective: To describe parent views on infant pain care and to explore relations between parents' experience of their infant's pain care and parental stress. Design: Descriptive, cross sectional survey. Setting: Nine neonatal units (196 parents) in the United Kingdom and two neonatal units in the United States (61 parents). Participants: Parents of preterm and full term infants admitted to hospital. Interventions: Parents completed a three part questionnaire after the second day of the infant's admission and after they had made at least one previous visit to see their infant in the neonatal unit. Main outcome measures: Parent concerns about infant pain; parental stress; parent state and trait anxiety. Results: Parents reported that their infants had experienced moderate to severe pain that was greater than they had expected (p < 0.001). Few parents (4%) received written information, although 58% reported that they received verbal information about infant pain or pain management. Only 18% of parents reported that they were shown signs of infant pain, but 55% were shown how to comfort their infant. Parents had numerous worries about pain and pain treatments. Parental stress was independently predicted by parents' estimation of their infant's worst pain, worries about pain and its treatment, and dissatisfaction with pain information received, after controlling for state anxiety and satisfaction with overall care (F = 29.56, df 6, p < 0.001, R-2 = 0.44). The findings were similar across sites, despite differences in infant characteristics. Conclusions: Parents have unmet information needs about infant pain and wish greater involvement in their infant's pain care. Parent concerns about infant pain may contribute to parental stress.