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Objectives: To explore discharge practices and the transition to neonatal home care for very preterm born infants and their parents. This thesis also aims to describe and evaluate the impact of involving parents and healthcare professionals in the co-design of an intervention intended to facilitate a safe and timely transition from hospital to home. 

Design: Paper I used a cross-sectional survey; Paper II employed qualitative interviews; Paper III applied a participatory co-design process with mixed-methods evaluation; and Paper IV presents a protocol for a pilot feasibility study of the co-developed TO HOME intervention, using a before-after design.

Setting: Neonatal units in Sweden and across the Nordic region participated. The co-design study was conducted at three Swedish units with varying structures for neonatal hospital and home care. The pilot study protocol describes discharge and home care practices at these units.

Participants: Paper I included medical directors from 83 of 89 (93%) Nordic neonatal units. Paper II involved interviews with one nurse and one physician from all 36 (100%) Swedish neonatal units. Paper III engaged a steering committee comprising parents and healthcare professionals, with additional public collaborators contributing to co-design workshops. The protocol in Paper IV outlines inclusion criteria for an upcoming feasibility study, with participants including infants born before 32 weeks of gestation, their parents, and healthcare professionals.

Results: Discharge decisions were primarily based on bedside assessments, with criteria varying across units and countries (Papers I and II). Criteria for apnoea and weight gain were heterogeneously defined, and half of the units lacked written discharge guidelines (Paper I). Healthcare professionals expressed ambivalence regarding discharge timing, the process was staff-driven with limited parental involvement, and staffing discontinuity contributed to delays (Paper II). The co-design process resulted in the development of the TO HOME intervention, a visual tool incorporating over 90% of parental recommendations (Paper III). The tool aims to support predictability, standardisation, timely preparation, and strengthen the parental role. It also highlights developmental milestones and discharge readiness criteria. Parents and healthcare professionals perceived the collaborative process as feasible and contributing to personal and professional development. Paper IV outlines a planned pilot study to evaluate the intervention’s feasibility, acceptability, fidelity, and preliminary effects on parent and infant outcomes.

Conclusions: Findings highlight opportunities for improved standardisation, earlier preparation, and enhanced parental involvement in discharge planning. The co-designed TO HOME intervention may support a safe and timely transition to home care, and its clinical relevance and impact will be evaluated in the forthcoming pilot study. Collaborative research with parents and healthcare professionals was feasible and had substantial influence on the development of the intervention.