Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Aug 15;11(1):97.
doi: 10.1186/s40900-025-00775-3.

Co-developing an intervention to facilitate safe and early transition to neonatal home care for very preterm infants: a mixed-method study evaluating the impact of patient and public involvement

Sofia Arwehed  1   2 , Ylva Thernström Blomqvist  3 , Elin Carlsson Filipowicz  4 , Anna Axelin  5
Affiliations

Co-developing an intervention to facilitate safe and early transition to neonatal home care for very preterm infants: a mixed-method study evaluating the impact of patient and public involvement

Sofia Arwehed et al. Res Involv Engagem. .

Abstract

Background: Very preterm born infants face elevated risks of adverse neurodevelopmental outcomes, with prolonged hospitalisation associated with poorer cognitive, motor, and language development. Contributing factors include limited parental presence, insufficient stimulation, and exposure to stressful procedures. In Nordic countries, neonatal home care programmes support early discharge by enabling parents to manage nasogastric tube feeding at home under specialist supervision. However, inconsistent discharge practices delay the transition to home by creating parental uncertainty and making the process more vulnerable to staff discontinuity. This study aimed to co-develop an intervention to support safe and early discharge and evaluate the impact of engaging parents and healthcare professionals as collaborators throughout the research process.

Methods: A descriptive mixed-methods study with an embedded process evaluation was conducted guided by participatory action research methodology. A Steering Committee consisting of two parents, a neonatal nurse, a researcher, and a coordinator managed the process. Five parents and seven healthcare professionals from three Swedish neonatal units representing diverse care models were purposively recruited for creative workshops, ensuring diversity in gender, culture, and professional background. Patient and public involvement (PPI) was evaluated through anonymised impact log surveys, a process log, standardised meeting minutes, semi-structured interviews with Steering Committee members, and a written survey of public contributors. Field notes, post-it notes, mind maps, and audio recordings supported data validation.

Results: The co-development process resulted in an intervention tool designed to visualise the neonatal care journey, discharge criteria, infant development, and parental preparation, including milestones to track progress and strengthen parental roles. More than 90% of stakeholder recommendations were implemented, closely aligning the tool with family needs. Key enablers of meaningful collaboration were a respectful, emotionally safe environment and a shared commitment to collaborative decision-making. Paired reflection supported individual expression. Parents appreciated the opportunity for emotional processing, while professionals valued gaining deeper insight into family perspectives.

Conclusion: This study demonstrates the feasibility and value of PPI in developing a neonatal care intervention. The resulting tool is intended to enhance predictability, standardisation, and timely discharge preparation while strengthening the parental role. A forthcoming feasibility study will assess its potential to improve discharge practices, support parental well-being, and facilitate safe and early transition to home.

Trial registration number: 279,523 (Registered 28th of September 2023 in Researchweb, Region of Gävleborg domain).

Keywords: Co-designed intervention; Discharge; Infant premature; Neonatal home care; Patient and public involvement..

Plain language summary

Parents of very preterm born infants often feel stressed when it’s time to take their infant home from the neonatal unit. Many have described the discharge process as unpredictable and lacking clear structure. To help address these challenges, we carried out a research project in partnership with parents and healthcare professionals. Together, we developed a new approach to better support families in preparing for discharge and making a smoother, earlier transition to neonatal home care.The project also aimed to help researchers better understand the impact and value of working closely with parents and healthcare professionals. To do this, we collected feedback through surveys, interviews, meeting notes, and logs. Our analysis showed that over 90% of the suggestions from parents and professionals were included in the final tool, making it well aligned with families’ needs. A respectful group atmosphere and shared purpose were key to meaningful collaboration. Parents appreciated the emotional support and sense of voice the process gave them, while staff valued the insight into family experiences.This study shows that working together with parents and professionals is not only possible but also improves the relevance and usefulness of the final tool. A future study will explore whether the tool helps families feel more prepared and confident when going home.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: Ethical approval was granted by the Swedish Ethical Review Authority (Dnr 2024-06793-01). Consent for publication: Patient consent for publication was not required as no patients participated. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Research cycle and PPI collaboration in the development of an intervention to facilitate very preterm infants transition from hospital to neonatal home care. Abbreviations: PC, Public Collaborators in workshop; PPI, Patient and Public Involvement SC, Steering Committee
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Kellner P, Kwon J, Smith J, Pineda R. Neurodevelopmental outcomes following preterm birth and the association with postmenstrual age at discharge. Am J Perinatol Apr. 2024;41(5):561–8. - PMC - PubMed
    1. Bowe AK, Lightbody G, Staines A, Murray DM, Norman M. Prediction of 2-Year cognitive outcomes in very preterm infants using machine learning methods. JAMA Netw Open Dec. 2023;1(12):e2349111. - PMC - PubMed
    1. Lundberg B, Lindgren C, Palme-Kilander C, Örtenstrand A, Bonamy AK, Sarman I. Hospital-assisted home care after early discharge from a Swedish neonatal intensive care unit was safe and readmissions were rare. Acta Paediatr Aug. 2016;105(8):895–901. - PubMed
    1. Moen A. How do we discharge preterm infants safely without unnecessary delay? Acta Paediatr. 2024;113(1):13–4. - PubMed
    1. Rosenbaek CH, Zachariassen G, Hoest B et al. Low readmission rates during neonatal homecare: Gestational age and bronchopulmonary dysplasia as key predictors. Acta Paediatr. Jan 7. 2025. - PMC - PubMed

LinkOut - more resources