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Aim

We aimed to describe clinical practices and criteria for discharge of very preterm infants in Nordic neonatal units.

Methods

Medical directors of all 89 level-2 and level-3 units in Denmark, Finland, Iceland, Norway and Sweden were invited by e-mail to complete a web-based multiple-choice survey with the option to make additional free-text comments.

Results

We received responses from 83/89 units (93%). In all responding units, discharge readiness was based mainly on clinical assessment with varying criteria. In addition, 36% used formal tests of cardiorespiratory stability and 59% used criteria related to infant weight or growth. For discharge with feeding tube, parental ability to speak the national language or English was mandatory in 45% of units, with large variation among countries. Post-discharge home visits and video-consultations were provided by 59% and 51%, respectively. In 54% of units, parental preparation for discharge were not initiated until the last two weeks of hospital stay.

Conclusion

Discharge readiness was based mainly on clinical assessment, with criteria varying among units despite similar population characteristics and care structures. This variation indicates a lack of evidence base and may unnecessarily delay discharge; further studies of this matter are needed. Earlier parental preparation and use of interpreters might facilitate earlier discharge.

Background

Early discharge to neonatal home care is common practice for preterm infants in Sweden but the evidence base for assessing infant and parent readiness is limited and there are no nationally defined discharge guidelines or criteria. To investigate potential facilitators and barriers in the transition to home, we examined discharge criteria, pre- and post-discharge practices, and staff decision-making.

Methods

All (n = 36) Swedish units participated in this descriptive mixed method study based on semi-structured interviews with one physician and one registered nurse representing each unit.

Results

Discharge criteria and practices varied, both between and within units. Staff were ambivalent about the timing of discharge and postponed giving discharge-related information to parents. The transition process was staff-driven, with limited parental involvement in care planning, and staff discontinuity delayed discharge. Home care combining telemedicine and home visits, adapted to the needs and preference of the family, was considered effective and appraised. Socially vulnerable families or those with limited language proficiency had restricted access to homecare.

Conclusions

There is a need for improved standardization of, and parental involvement in discharge planning for preterm infants. Earlier transfer of care responsibilities to parents should facilitate transition to home and shorten length of hospital stay.

Impact

• Our findings provide insight into facilitators and barriers in preterm infants’ transition from hospital to home.

• Staff were ambivalent about timing of discharge, and criteria and practices varied between and within units depending on local routines and staff preferences.

• The transition process was staff-driven, with limited parental involvement in care planning, and staff discontinuity caused delay.

• Home care models combining telemedicine and home visits, adapted to the needs of the family, was described as effective and appraised.

• Empowering parents by earlier transfer of care responsibilities and involvement in care planning, could facilitate transition to home and reduce length of stay.

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).