Neonatal Medicine, School of Public Health, Imperial College London, London, UK.
Picker Institute Europe, Oxford, UK.
Arch Dis Child Fetal Neonatal Ed. 2023 Jul;108(4):416-420. doi: 10.1136/archdischild-2022-324548. Epub 2023 Jan 30.
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.
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.
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.
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.
评估父母对新生儿服务的体验有助于改善护理质量；然而，目前英国尚无用于前瞻性评估的经过正式评估的工具。我们的目的是改进现有的回顾性调查，以提供“实时”反馈。
由一位家长代表共同领导，我们招募了伦敦一家三级新生儿单位的婴儿家长作为便利样本。我们的指导小组从现有的回顾性 61 题 Picker 调查（2014 年）中选择问题，并添加和修改了评估沟通和家长参与的问题。我们确立了表面有效性，确保问题充分涵盖主题，进行了家长认知访谈以评估家长对问题的理解，并在三个修订周期中调整了调查。我们评估了调查性能。
修订后的《新生儿护理中父母沟通体验》（PEC）调查包含 28 个问题（新增 10 个），重点关注沟通和家长参与。我们对六名家长进行了认知访谈，在调查性能评估中，有 67 名家长完成了 197 份 PEC 调查。九个问题的缺失条目超过 5%；我们删除了一个问题，并对其余问题进行了格式调整，因为它们在认知测试中表现良好。两个问题对之间存在很强的项目内相关性；然而，由于它们各自评估了重要概念，因此都被保留了下来。
从最初的 61 题 Picker 调查修订而来，28 题的 PEC 调查是英国第一个经过正式评估的工具，用于评估父母在婴儿接受新生儿护理期间的体验。该调查由家长共同开发，重点关注沟通和家长参与，能够对以家庭为中心的新生儿护理干预措施进行持续评估和迭代改进。
