Parents' Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback.

Objective: Assessing parent experiences of neonatal services can help improve quality of care; however, there is no formally evaluated UK instrument available to assess this prospectively. Our objective was to refine an existing retrospective survey for 'real-time' feedback.
Methods: Co-led by a parent representative, we recruited a convenience sample of parents of infants in a London tertiary neonatal unit. Our steering group selected questions from the existing retrospective 61-question Picker survey (2014), added and revised questions assessing communication and parent involvement. We established face validity, ensuring questions adequately captured the topic, conducted parent cognitive interviews to evaluate parental understanding of questions,and adapted the survey in three revision cycles. We evaluated survey performance.
Results: The revised Parents' Experiences of Communication in Neonatal Care (PEC) survey contains 28 questions (10 new) focusing on communication and parent involvement. We cognitively interviewed six parents, and 67 parents completed 197 PEC surveys in the survey performance evaluation. Missing entries exceeded 5% for nine questions; we removed one and format-adjusted the rest as they had performed well during cognitive testing. There was strong inter-item correlation between two question pairs; however, all were retained as they individually assessed important concepts.
Conclusion: Revised from the original 61-question Picker survey, the 28-question PEC survey is the first UK instrument formally evaluated to assess parent experience while infants are still receiving neonatal care. Developed with parents, it focuses on communication and parent involvement, enabling continuous assessment and iterative improvement of family-centred interventions in neonatal care.
Competing Interests: Competing interests: SS received research grants from the National Institute of Health Research (NIHR), the NIHR CLAHRC NWL, Rosetrees Trust and CW+ charity. NM is director of the neonatal data analysis unit at Imperial College London. In the last 5 years, NM served on the Board of Trustees of the Royal College of Paediatrics and Child Health, David Harvey Trust, Medical Women’s Federation, Medact, Action Cerebral Palsy and Academy of Medical Sciences, and is a member of the Nestle Scientific Advisory Board; received research grants from the British Heart Foundation, Medical Research Council (MRC), National Institute of Health Research, Westminster Research Fund, Collaboration for Leadership in Applied Health and Care Northwest London, Healthcare Quality Improvement Partnership, Bliss, Prolacta Life Sciences, Chiesi, Shire, HCA International, Health Data Research UK and European Health Data Research Network; received travel and accommodation expenses from Prolacta, Nestle and Chiesi; and received honoraria from Medela for contributions to expert advisory boards, and Chiesi for contributing to a lecture programme. CG was funded by the UK Medical Research Council through a Clinician Scientist Fellowship award; received support from Chiesi Pharmaceuticals to attend an educational conference; in the past 5 years, he was investigator on received research grants from MRC, National Institute of Health Research, Canadian Institute of Health Research, Department of Health in England, Mason Medical Research Foundation, Westminster Medical School Research Trust and Chiesi Pharmaceuticals. This article presents independent research supported by the National Institute for Health Research (NIHR). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
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