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Background: 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. Methods: 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. Results: 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. Conclusion: 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. Plain English summary: It is usual practice to involve parents in decisions about their babies care in neonatal intensive care units, but their involvement in research is less common. Although patient and public involvement in research is increasing, there is a lack of strategies to ensure meaningful involvement. This qualitative study used interviews, to explore how parents and researchers experienced patient and public involvement in a research project about couplet care in a neonatal intensive care unit. Nine parents and four researchers participated and the analysis revealed several themes that describes their experiences. These themes were consolidated into three main concepts: (1) Embracing the ethos and pathos of patient and public involvement, which focuses on the emotional and ethical aspects of involvement, (2) Finding the path to maximize meaningful involvement, which addresses the strategies and methods to ensure effective involvement, and (3) Becoming skilled in engaging patient and the public in research, which emphasizes the need for developing skills and knowledge for better involvement practices. These core concepts provide a comprehensive understanding of how to enhance involvement, not only in the neonatal setting, but research in general. [ABSTRACT FROM AUTHOR]

Background/Objectives: Long hospitalisation has been recognized as an independent risk factor for poor neurodevelopmental outcomes of preterm infants. Systematic training and early inclusion of parents in their preterm infant's care is a strategy to shorten the length of hospital stay. We implemented an enhanced stepwise family-centred care program and assessed its effects on postmenstrual age (PMA) at discharge and parental satisfaction. Methods: This prospective single-centre longitudinal cohort study was carried out in a German level III neonatal unit from October 2020 to May 2023. Five consecutive 6-month cohorts (1 baseline and 4 intervention cohorts, 169 infants and their caregivers) were analysed. Results: Mean PMA at discharge did not change in the total cohort but declined significantly in patients without neonatal morbidities from baseline to cohort 4 (37.2 ± 1.4 to 36.1 ± 1.6 weeks; p = 0.036). Concomitantly, discharge with tube feeding raised from 2.4% to 74.1% (p < 0.001) and discharge with home monitoring raised from 9.8% to 74.1% (p < 0.001), while unplanned readmissions remained unchanged (p = 0.44). Parental satisfaction with time point of discharge increased non-significantly from baseline to cohort 4 (75.8% vs. 95.7%; Chi2 0.22). Conclusions: Discharge of preterm infants at a significantly lower PMA is feasible through enhancement of family-centred care and is very well accepted by parents. [ABSTRACT FROM AUTHOR]

The article discusses the variations in discharge practices for preterm infants in Nordic countries. It highlights the geographic variation in neonatal intensive care unit (NICU) admission rates and treatment, as well as the differences in care and management of very preterm infants. The article also addresses the challenges of determining safe discharge criteria and the importance of family-centered care. It raises concerns about criteria that may discriminate based on race or socio-economic status and suggests measures to increase support for parents in challenging situations. The article concludes by emphasizing the need for further research to determine safe discharge criteria without unnecessary delays. [Extracted from the article]

Background: 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. Methods: 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. Results: 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. Conclusion: 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. Plain English summary: It is usual practice to involve parents in decisions about their babies care in neonatal intensive care units, but their involvement in research is less common. Although patient and public involvement in research is increasing, there is a lack of strategies to ensure meaningful involvement. This qualitative study used interviews, to explore how parents and researchers experienced patient and public involvement in a research project about couplet care in a neonatal intensive care unit. Nine parents and four researchers participated and the analysis revealed several themes that describes their experiences. These themes were consolidated into three main concepts: (1) Embracing the ethos and pathos of patient and public involvement, which focuses on the emotional and ethical aspects of involvement, (2) Finding the path to maximize meaningful involvement, which addresses the strategies and methods to ensure effective involvement, and (3) Becoming skilled in engaging patient and the public in research, which emphasizes the need for developing skills and knowledge for better involvement practices. These core concepts provide a comprehensive understanding of how to enhance involvement, not only in the neonatal setting, but research in general. [ABSTRACT FROM AUTHOR]