PT  - JOURNAL ARTICLE
AU  - Susanna Sakonidou
AU  - Sophia Kotzamanis
AU  - Amy Tallett
AU  - Alan J Poots
AU  - Neena Modi
AU  - Derek Bell
AU  - Chris Gale
TI  - Parents’ Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-time parent feedback
AID  - 10.1136/archdischild-2022-324548
DP  - 2023 Jan 30
TA  - Archives of Disease in Childhood - Fetal and Neonatal Edition
PG  - fetalneonatal-2022-324548
4099  - http://fn.bmj.com/content/early/2023/01/30/archdischild-2022-324548.short
4100  - http://fn.bmj.com/content/early/2023/01/30/archdischild-2022-324548.full
AB  - 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.Data are available upon reasonable request. An anonymised dataset of PEC surveys completed by parents was analysed for this study’s validation analysis.