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

Susanna Sakonidou1, Sophia Kotzamanis1, Amy Tallett2

  • 1Neonatal Medicine, School of Public Health, Imperial College London, London, UK.

Archives of Disease in Childhood. Fetal and Neonatal Edition
|January 30, 2023
PubMed

Insights

The new Parents' Experiences of Communication in Neonatal Care (PEC) survey offers real-time feedback on neonatal services. This formally evaluated UK instrument, co-developed with parents, enhances family-centred care quality.

Area of Science:

  • Neonatal care quality improvement
  • Patient experience research
  • Healthcare survey development

Background:

  • Assessing parent experiences is crucial for improving neonatal care quality.
  • No formally evaluated UK instrument exists for prospective assessment of neonatal service experiences.
  • Existing retrospective surveys lack real-time feedback capabilities.

Purpose of the Study:

  • To refine an existing retrospective survey for real-time feedback on neonatal care.
  • To develop a formally evaluated UK instrument for prospective assessment of parent experiences.
  • To enhance the quality of care through continuous assessment of parent involvement and communication.

Main Methods:

  • Co-led by a parent representative, a convenience sample of parents from a London tertiary neonatal unit was recruited.
  • Questions were selected from the 61-question Picker survey (2014), with new questions added and revised to assess communication and parent involvement.
  • Face validity and cognitive interviews with parents were conducted across three revision cycles to evaluate and adapt the survey.

Main Results:

  • The revised Parents' Experiences of Communication in Neonatal Care (PEC) survey comprises 28 questions, including 10 new ones, focusing on communication and parent involvement.
  • Cognitive interviews were conducted with six parents, and 197 PEC surveys were completed by 67 parents during performance evaluation.
  • One question was removed due to missing entries exceeding 5%, and others were format-adjusted after successful cognitive testing.

Conclusions:

  • The 28-question PEC survey is the first UK instrument formally evaluated for assessing parent experiences during ongoing neonatal care.
  • Developed collaboratively with parents, the PEC survey focuses on communication and parent involvement.
  • This instrument enables continuous assessment and iterative improvement of family-centred interventions in neonatal care.
Abstract

Keywords:
child health servicesintensive care unitsintensive care units, neonatalneonatologypaediatrics

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