Parental perceptions of hypothermia treatment for neonatal hypoxic-ischaemic encephalopathy.

Aims: Hypothermia Treatment (HT) is now the standard care for neonatal hypoxic-ischaemic encephalopathy (HIE). We conducted a survey to explore parental perceptions of HT as there is little information about this in the current literature.

Methods: Postal questionnaire survey included families (n = 51) whose babies received HT at Princess Anne Hospital, Southampton, UK, with 23 questions covering communication, clinical management, follow-up, and care in general. Statistical analysis of descriptive and analytical tests were done using Minitab 16.

Results: The response rate was 60.8%. All parents had concerns amongst which perceptions of pain and distress were described by 41%. Temporary concerns about bonding were common (83.8%), more so in babies transferred from other hospitals (p = .04). Only 61.3% felt they had a good understanding of HT. The need for improvements in the quality (71%) and frequency of communication (48.3%) were also highlighted.

Conclusions: Parents were worried about pain and distress, bonding and about outcomes after HT. Consistency in communication, regular updates, involvement of parents in decision making, strong support mechanisms and balanced discussions about long term outcomes at an early stage are of high importance to families whose babies undergo HT.