Aims 1)To evaluate parent perspectives on the standard of practice regarding the Newborn Infant Physical Examination (NIPE). 2) To evaluate what information is already given to parents regarding NIPE electronic health records and how it is utilised. 3) To gain insight into parents’ views on data sharing for research and the potential development of an opt-out system for data collected during the NIPE.
Methods The study was determined as a ’service evaluation' using the Health Research Authority decision tool. A three part questionnaire based on the Medicines for Neonates study was designed to collect demographic and qualitative data prospectively from parents of newborn babies. A poster to publicise the study and aid recruitment was put up on the delivery suite, midwifery led birthing centre, postnatal ward and the neonatal unit. Parents of newborns who had undergone their NIPE within the previous 5 days were approached and verbally consented at the bedside in the postnatal areas of the hospital, to participate in the study. The questionnaire was completed by the parent (s) and a member of clinical staff. Data was collected over a 4 week period and stored and results analysed using Excel.
Results The parents of 51 newborns completed questionnaires. All the parents confirmed that the NIPE was completed within 72 h, demonstrating compliance with the Key Performance Indicator. Seventy-five per cent of participants rated the standard of neonatal care as seven out of seven (the maximum score). Sixty-nine per cent of participants received no information regarding the NIPE database, however 71% thought parents would find this information useful. Ninety-two per cent were willing to share their baby’s data for research purposes and 80% were in favour of an opt- out system for NIPE data sharing.
Conclusion Participants were pleased with the standard of neonatal care. We may be making assumptions about parental knowledge of data sharing and underestimate their willingness to share data for research purposes. Parents may be more obliging to support an opt-out system for NIPE data sharing than we realise. This area warrants further investigation.
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