New research that addresses knowledge and evidence gaps that exist in data on life-limiting conditions (LLCs) in children – has been awarded a Health Research Board Applied Partnership Award.
Principal investigator Dr Samantha Smith, Centre for Health Policy and Management, 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.
The project: Improving Children's Palliative Care in Ireland (iCPCi): using evidence to guide and enhance palliative care for children with life-limiting conditions and their families will provide much-needed information on children with life-limiting conditions (LLCs) and palliative care needs in Ireland.
Children’s palliative care (CPC) is not just about managing pain at end-of-life, it is about living in every sense of the word, supporting children with life-limiting conditions (and their families) to achieve goals within their own limitations. Explaining the driving force behind the research, Dr Smith explains:
“In Ireland we do not know how many children have life-limiting conditions and need palliative care. UK-based estimates are available but are out-of-date and not detailed enough to help plan palliative services. There are concerns about missed palliative care referrals, geographic inequalities in access to palliative care, and lengthy hospital stays for children with life-limiting conditions.
Our team includes parents of children with life-limiting conditions, children’s palliative care policymakers, planners, providers, and researchers. We will examine available data to address these evidence gaps and to guide and improve children’s palliative care policy, planning, and service delivery in Ireland.”
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.
Dr Smith concluded:
“By providing CPC knowledge users with information they have long been seeking, this project can improve CPC so that the right palliative supports are in the right places at the right times for children and their families who need them. This will improve quality of life for these children and families, in many cases where the opportunity for quality of life is so short but so precious.
[This project represents] Policy-relevant research at its best – it’s a privilege to work with this collaborative team of children’s palliative care experts to answer questions they have been asking for years.”
Project collaborators and funders include:
Co-funding from Irish Hospice Foundation and LauraLynn Ireland’s Children’s Hospice
Co-applicants:
Dr Mary Devins, Children’s Health Ireland at Crumlin
Euan Mackay, Irish Hospice Foundation
Professor Lorna Fraser, King’s College London
Dr Peter May, Centre for Health Policy & Management, Trinity College Dublin
Dr Fiona McElligott, Children’s Health Ireland at Temple Street
Ms Orla Murphy, PPI Contributor, LauraLynn Ireland’s Children’s Hospice
In collaboration with:
Dr Helen Coughlan, RCSI University of Medicine and Health Sciences
Sinead O’Hara, Healthcare Pricing Office, HSE
Dr Mary Rabbitte, All Ireland Institute of Hospice and Palliative Care
Maurice Dillon, HSE National Lead for Palliative Care
Paul Rowe, Older Person’s Strategy Unit, Department of Health
Dr Cliona McGarvey, National Office of Clinical Audit (NOCA)
Tyrone Horne, HSE Cork University Hospital
Prof Suzanne Guerin, School of Psychology, UCD