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. 2025 Jan 6;11(1):1.
doi: 10.1186/s40900-024-00670-3.

Patient and public involvement in neonatal research - experiences and insights from parents and researchers

Michella Bjerregaard  1   2 , Ingrid Poulsen  3   4   5 , Emma Carlsen  6   7 , Antonio Esparza  8 , Joanna Smith  9 , Anne Brødsgaard  3   6   5   10
Affiliations

Patient and public involvement in neonatal research - experiences and insights from parents and researchers

Michella Bjerregaard et al. Res Involv Engagem. .

Abstract

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.

Keywords: Family-centered care; NICU; Neonatal intensive care unit; PPI; Patient and public involvement; Qualitative research.

Plain language 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.

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Conflict of interest statement

Declarations. Ethical approval and consent to participate: The study was conducted in line with the Declaration of Helsinki. All participants received oral and written information about the study and provided written consent to participate. Data were handled confidentially and stored on a hospital-secured drive according to the Danish Data Protection Authority (Number: P-2021-872). The Danish Research Ethics Committee has been consulted and confirmed that no ethical approval was required (Reference number: F-21056981). Consent for publication: All participants have consented to the pseudonymised publication of the interview data. Competing interests: The authors declare no competing interests.

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