Bjerregaard Michella, Poulsen Ingrid, Carlsen Emma, Esparza Antonio, Smith Joanna, Brødsgaard Anne
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Capital Region of Denmark, Denmark.
Res Involv Engagem. 2025 Jan 6;11(1):1. doi: 10.1186/s40900-024-00670-3.
Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers' experiences of patient and public involvement in a neonatal research project.
A qualitative design was employed, consisting of two focus group interviews, one dyadic interview, and four individual interviews with parents and researchers. The interviews followed a semi-structured guide specific to both parents and researchers. Data were analysed using content analysis as described by Graneheim and Lundman.
A total of nine parents and four researchers participated in the study. Seven themes were consolidated into three core concepts: Embracing the ethos and pathos of patient and public involvement, Finding the path to maximise meaningful involvement, and Becoming skilled in engaging patients and the public in research. The core concepts highlighted both similarities and differences, as well as challenges and facilitators, of the experiences of the patient and public involvement process.
Patient and public involvement in research was a mutually beneficial process, facilitating learning and reflective opportunities for parents and researchers. However, there were challenges that emphasised the need for rapport building between parents and researchers, valuing everyone's unique perspective and expertise, with clear communication and well-defined roles and goals. These insights offer a contribution for future patient and public involvement in health research.
在大多数新生儿重症监护病房，让父母参与有关其婴儿护理的决策是常见做法。然而，父母参与新生儿研究的情况较少见，并且在理解患者及公众参与过程方面似乎存在差距。本研究的目的是探讨父母和研究人员在一个新生儿研究项目中患者及公众参与方面的经历。
采用定性设计，包括两次焦点小组访谈、一次二元访谈以及对父母和研究人员的四次个人访谈。访谈遵循针对父母和研究人员的半结构化指南。使用格兰内海姆和伦德曼描述的内容分析法对数据进行分析。
共有九名父母和四名研究人员参与了该研究。七个主题被整合为三个核心概念：接受患者及公众参与的精神和情感、找到使有意义的参与最大化的途径、以及在让患者和公众参与研究方面变得熟练。这些核心概念突出了患者及公众参与过程中经历的异同、挑战和促进因素。
患者及公众参与研究是一个互利的过程，为父母和研究人员提供了学习和反思的机会。然而，存在一些挑战，强调需要在父母和研究人员之间建立融洽关系，重视每个人独特的观点和专业知识，进行清晰的沟通并明确角色和目标。这些见解为未来患者及公众参与健康研究做出了贡献。
