New research addressing knowledge and evidence gaps that exist in data on life-limiting conditions (LLCs) in children – Improving Children’s Palliative Care Outcomes in Ireland (iCPCi) – commenced recently, having been awarded a Health Research Board Applied Partnership Award in December 2022. In Ireland it is not known how many children have life-limiting conditions and need palliative care. At present there are only UK-based estimates which are out-of-date and not detailed enough to assist in planning palliative services.
Dr Samantha Smith, Centre for Health Policy and Management, Trinity College Dublin said “Children’s palliative care is not just about managing pain at end-of-life, it is about living in every sense of the word, providing supports to children with life-limiting conditions and their families to enable them achieve goals within their own limitations. Children’s palliative care makes a positive difference throughout a child’s life by managing symptoms, arranging short breaks, and planning what to do if/when symptoms change or treatment fails.”
LauraLynn, Ireland’s Children’s Hospice and Irish Hospice Foundation (IHF) are co-funders in the research project. Principal investigator Dr Samantha Smith, alongside Dr Joanne Balfe, Tallaght Hospital and LauraLynn Ireland’s Children’s Hospice have been announced as recipients of the award. The data gathered will guide and improve children’s palliative care policy, planning, and service delivery in Ireland.
LauraLynn CEO Kerry McLaverty commented “We are really pleased to kick off this monumental piece of research, which will have a transformative effect on our understanding of and future planning for children’s palliative care, in Ireland and in LauraLynn. Finding answers to the many questions there are regarding the number of children with palliative care needs living in our country and how they need healthcare to support them day to day, is fundamental to ensuring that those children and their families have access to and choice in the care and support they need to make the most of every day together. LauraLynn is proud to co-fund this research project with Irish Hospice Foundation and Health Research Board, and to be part of the fantastic project team collaborating on the research. Today is a huge milestone in LauraLynn’s commitment to reach more children and families that need our hospice care.”
Policymakers, planners, and providers of palliative care will use this information to update CPC policy on defining who the service is for, quantify resource and workforce needs, improve CPC referral process, and other changes to improve CPC access.
Irish Hospice Foundation CEO Paula O’Reilly said “We are delighted to announce, alongside LauraLynn, this ground-breaking research which is vital to fully understand the landscape and requirements for children’s palliative care in Ireland. IHF is very proud to fund this research in partnership with LauraLynn and Health Research Board. Our mission at IHFis to ensure best end–of-life and bereavement care for all. IHF look forward to the completion of this body of work which will inform and support the evolution of children’s palliative care in Ireland in the coming years.”
The research project will enable the team to review different definitions of life-limiting conditions and palliative care needs. There are concerns that children with life-limiting conditions have lengthy hospital stays and have difficulty accessing palliative care across the country. Examining national datasets on hospital stays, deaths, children’s palliative care activity and others to learn about children who are at different stages. Comparisons on the geographic location of children’s palliative care services with where children with life-limiting conditions live will be made. All of this information will be used to guide and improve children’s palliative care policy, planning, and service delivery, supporting the goal of universal access to palliative care in Ireland.