The analysis estimates that up to 1 in 168 children and young people in Ireland were living with life‑limiting conditions in 2019 — or between 5,968 and 7,951 children and young people. This compares to previous estimates of 3,840 children and young people. It found rates were highest among infants under one year of age, reinforcing the importance of strong perinatal and neonatal palliative care provision within maternity and neonatal units in the country.
For many years, the absence of accurate national data has made it harder to fully understand and plan for the needs of these children. The ECHPI study now provides a clear, evidence-based picture of both the scale and complexity of care required.
LauraLynn is proud to have co-funded the research and to have contributed to its collaborative approach, bringing together researchers, clinicians, policymakers and families to ensure the findings reflect real lived experience.
Kerry McLaverty, CEO of LauraLynn, said:
“This research expresses, in robust national data terms, the reality families and services see every day. Children with life-limiting conditions have complex needs, and their families need a system that properly supports them — at home, in hospital and in their communities.
For the first time, we now have a clear national picture of need. That is a critical step forward in ensuring care and services are planned based on evidence, not estimates.”
The findings give long-overdue visibility to children and families living with life-limiting conditions, and provide a strong foundation for future policy, service planning and provision — particularly at a time when national policy is under review.
At the heart of LauraLynn’s strategy is a clear ambition: that every child and family, no matter where they live, can access the specialist care and support they need, when and where they need it. The ECHPI study marks a significant step forward — for LauraLynn, and for Ireland.
