Balamurugan Thyagarajan1,2, Vijay Baral1,3, Ranjit Gunda1,4, Denise Hart5, Lisa Leppard1, Brigitte Vollmer6,7. 1. a Neonatal Unit, Princess Anne Hospital, University Hospital Southampton NHS Foundation Trust , Southampton , UK. 2. b Regional Neonatal Intensive Care Unit, St Michaels Hospital , Bristol , UK. 3. c Department of Neonatal and Developmental Medicine , Singapore General Hospital , Singapore. 4. d Neonatal Unit, Queen Alexandra Hospital , Portsmouth , England. 5. e Department of Paediatric Physiotherapy , Southampton Children's Hospital, University Hospital Southampton NHS Foundation Trust , Southampton , UK. 6. f Clinical Neurosciences, Clinical and Experimental Sciences, University of Southampton , Southampton , UK. 7. g Southampton Children's Hospital, University Hospital Southampton NHS Foundation Trust Southampton , Southampton , UK.
Abstract
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.
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.
Authors: David Odd; Satomi Okano; Jenny Ingram; Peter S Blair; Amiel Billietop; Peter J Fleming; Marianne Thoresen; Ela Chakkarapani Journal: BMJ Paediatr Open Date: 2021-12-16
Authors: Christopher McPherson; Adam Frymoyer; Cynthia M Ortinau; Steven P Miller; Floris Groenendaal Journal: Semin Fetal Neonatal Med Date: 2021-06-23 Impact factor: 3.926