Family-Centred Cancer Care End of Life Education (FCCC-EoLEd)

Project Outline

In Ireland, approximately one in seven people with cancer are between 20 - 50 years old; many having young children.  This group of patients is increasing, with more people having children later in life.   When a parent of young children (<18 years old) has cancer, this has a devastating impact on the whole family.  Not surprisingly, preparation for end of life (EoL) is one of the greatest challenges faced by parents with young children.

Parents at EoL, want and need help and guidance from health and social care professionals (HSCPs) on how to manage family life and support their children.  Key concerns include, how and when to communicate their poor prognosis and prepare children for mum or dad’s death.  Children excluded from these key conversations, are more likely to have poorer adjustment and emotional problems, not only during childhood but in adult life.

HSCPs are well placed to provide essential support and guidance to parents, but often lack knowledge and skills.  Parents are frequently left in the dark, grappling to manage these difficult situations with their children.

The aim of this project is to ensure all families in Ireland who have a mum or dad at EoL, will have the necessary psycho-oncology care through upskilling HSCPs to deliver much needed family-centred care, which is currently lacking. We propose to develop and evaluate a novel evidence-based eLearning training resource for HSCPs, to help them acquire skills, knowledge and confidence.  The project will promote short-term and long-term family resilience for parents and children.

This eLearning resource will be co-designed with HSCPs, parents and children impacted by parental cancer and experts in the field.  Once developed and evaluated, using a mixed methods approach to include generating data on the process of implementation, it is expected the resources will be economically sustainable and scalable.