The Perinatal-Neonatal Care Journey for Parents of Preterm Infants What Is Working and What Can Be Improved

Preterm birth is traumatic for parents, but there are few reports of parents' views on how the healthcare journey can be improved. This secondary thematic analysis used focus group data from parent consultation on proposed neonatal services standards for Northern Ireland to discover parents' experiences and recommendations for the perinatal, neonatal, and home care phases. Parents of preterm infants (n = 40) described their healthcare journey as positive overall and were grateful for the caring and competent care providers they encountered. However, parents described experiences that varied in quality and family centeredness across the care journey from perinatal to home care. They noted inconsistencies in healthcare team communication and provider practices and reported receiving limited emotional and practical support at all phases. In the perinatal phase, parents described difficult situations of discovering medical problems leading to preterm birth. In the neonatal intensive care unit phase, they also experienced unmet needs for involvement in decision making, financial strain, and difficulty coping with transfers and discharge. Parents experienced emotional challenges and lack of support in the home care phase. Parents identified actions that health systems can take to improve the consistency of care and communication across all phases and settings to encourage better collaboration and transitions in care.