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Gathering and examining information for improving how children’s palliative care is planned and delivered in Ireland

Research Project Title

Improving Children’s Palliative Care in Ireland: using evidence to guide and
enhance palliative care for children with life-limiting conditions and their families

KeyWords

children; palliative; life-limiting; Ireland

Challenge

In Ireland we don’t know how many children have life-limiting conditions and need palliative care. We have UK-based estimates which are out-of-date and not detailed enough to help plan palliative services. We don’t know how many children miss out on palliative care referral because some clinicians view it as end-of-life care, or because the definition of life-limiting changes over time with improvements in life-expectancy for some conditions. There are concerns that children with life-limiting conditions have lengthy hospital stays and have difficulty accessing palliative care across the country. This project will gather and examine information to address these knowledge gaps and to improve how children’s palliative care is planned and delivered in Ireland.

Research Project aims and methods

Our team includes parents of children with life-limiting conditions, children’s palliative care policymakers, planners, providers, and researchers. We will discuss different definitions of life-limiting conditions and palliative care need. We will examine national datasets on hospital stays, deaths, children’s palliative care activity and others to learn about children who are at different stages (dying, unstable and receiving emergency care, deteriorating and receiving intensive care) of their illness. We will look at how complex these children’s needs are, and how they use hospitals. We will compare the geographic location of children’s palliative care services with where children with life-limiting conditions live. We will use all this information to guide and improve children’s palliative care policy, planning, and service delivery, supporting our goal of universal access to palliative care in Ireland.

Public, patient and personal involvement (PPI)

The Family Engagement Committee at LauraLynn, Ireland’s Children’s Hospice, is our PPI co-applicant for this project.
This group of parents have children who have, or have had, direct experience of children’s palliative care in Ireland. Our PPI co-applicant was involved during the project proposal stage and will take part in the project advice team. This is the team that includes all our co-applicants and collaborators and will meet at key points in the project, provide general oversight for project progress and assess what are the key messages from the analysis. In this sense, our PPI co-applicant will have involvement at all stages in the project.

Research Outputs

The protocol or way we will carry out the review of the published literature to support the need for children’s palliative care has been published, please see link to document here.

Timeline

March 2023 – March 2025

Research Team

We are a collaboration of researchers, knowledge users, PPI, and data controllers. The project is managed by Drs Samantha Smith (Lead Researcher) and Joanne Balfe (Lead Knowledge User) and supported by the project advice team which includes representatives from the Children’s Palliative Care Strategic Advisory Group, our PPI representative, the Department of Health, national and international palliative care researchers, and data controllers.

Researchers
Dr Samantha Smith, Centre for Health Policy and Management, Trinity College Dublin
Dr Peter May, Centre for Health Policy and Management, Trinity College Dublin
Dr Tara Delamere, Centre for Health Policy and Management, Trinity College Dublin
Prof Lorna Fraser, King’s College London
Prof Suzanne Guerin, University College Dublin & Research at LauraLynn
Dr Helen Coughlan, St Vincent’s University Hospital

Knowledge Users & PPI
Dr Joanne Balfe, LauraLynn & Tallaght Hospital
Ms Orla Murphy, PPI Representative
Ms Avril Easton, Irish Hospice Foundation
Mr Maurice Dillon, Health Service Executive
Mr Tyrone Horne, HSE Cork University Hospital
Dr Mary Rabbitte & Dr Emer Brangan, All Ireland Institute of Hospice and Palliative Care
Dr Fiona McElligott, Temple Street Hospital
Dr Mary Devins, Crumlin Hospital
Mr Paul Rowe, Department of Health

Data Controllers
Ms Sinead O’Hara, Healthcare Pricing Office, HSE
Dr Cliona McGarvey, National Office of Clinical Audit

Funding & Support

This project is funded by the Health Research Board with additional co-funding from the Irish Hospice Foundation and LauraLynn Ireland’s Children’s Hospice

Related prior work

The need for this research into children’s palliative care in Ireland has been repeatedly highlighted by national planning groups, national policy, and research literature as summarised in the following figure:

Figure 1: Synthesis of documented evidence gaps for Children’s Palliative Care in Ireland

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