Children’s palliative care (CPC) can improve symptom control and quality of life for children with life-threatening or life-limiting conditions (LLCs) and their families, potentially reduce hospitalisations, and increase the likelihood that children will die in their preferred location. Internationally, access to CPC lags behind that of adult services. In Ireland, although universal access to CPC is a national policy objective, there are concerns about inconsistent referral patterns, unmet needs, and lengthy hospital stays for children with LLCs, limited CPC workforce planning, and geographic inequalities in CPC supply.
These problems are consequences of substantial gaps in evidence needed to properly plan and deliver CPC in Ireland. The number of children with LLCs needing CPC in Ireland is unknown. Available estimates are based on English prevalence data despite documented concerns about cross-country differences, and are insufficiently detailed for service planning (e.g., demographic profile, stage of illness, complexity of need). We don’t know how many children Ms out on CPC referral because some clinicians view it as end-of-life care, or because LLC definitions change over time as prognoses improve. There are gaps in evidence on healthcare use by children with LLCs, and on geographic patterns of CPC supply.
This project will examine and discuss definitions of LLCs and CPC need using qualitative and quantitative methods. In addition, quantitative analytic techniques will be used to undertake needs assessment (profile of children with CPC needs), examine patterns of hospital use, and measure geographic equality/equity in CPC supply. Secondary data sources include: Hospital In-patient Enquiry, National Paediatric Mortality Register, CPC activity, Paediatric Intensive Care Unit Audit. The project team, comprising parents of children with LLCs, CPC policymakers, planners, providers, and researchers is well-placed to interpret and translate the findings into improvements in Irish CPC policy, planning and delivery, progressing towards the national goal of universal CPC.
