Care at the end of life in babies and children (NICU and PICU) WS3b

  • Research type

    Research Study

  • Full title

    End of Life Care for Infants, Children and Young People: a mixed methods evaluation of current practice in England and Wales. (Workstream 3 PART B: Prospective evaluation of care at the end of life in babies and children in NICU and PICU)



  • Contact name

    Lorna Fraser

  • Contact email

  • Sponsor organisation

    University of York

  • Duration of Study in the UK

    1 years, 5 months, 27 days

  • Research summary

    This application only relates to one part of the third workstream (WS3b) of the ENHANCE study. WS3b is part of a larger study, which aims to increase understanding about different ways in which end of life care (EoLC) is provided for babies, children and young people, and to examine how they impact on children and their families. Ultimately, this will enable us to improve care for the future.

    Around 4500 babies and children die each year across the UK. There is evidence that provision of EoLC varies across the country but it is not clear how such variation impacts on children and their families. There are growing numbers of specialist palliative care services and children’s hospices in the UK, but little evidence to inform how they should be developed and what their role should be in supporting babies, children and young people at the end of life. We also know little about the costs of care and how best to deploy limited healthcare resources in order to improve care for these children and their families.

    In this study, we will describe the care and choices offered to families around the end of life period for their baby or child and see if any of them is/are associated with different child or parental outcomes.

    We will ask the clinical teams in neonatal intensive care units and paediatric intensive care units to collect additional information on the choices that parents are offered if their baby or child is at risk of dying. This will include if a care plan was made, if a specialist palliative care team is involved, and if parents were offered a choice of place of care. If the baby or child dies then a member of the clinical team or bereavement team will give the parent(s) information about this study. If the parent(s) are interested in finding out more about the study then they can ask the clinical team to pass their contact details to the research team, or they can contact the research team themselves. If, after finding out more about the study, they wish to continue then they will be sent a paper or electronic questionnaire to complete with the help of the research team if they would like this.

    We will share the findings of this study with policy makers, clinicians, organisations that support parents and service providers. They will use all this information to inform future delivery of EoLC for babies and children.

  • REC name

    London - Surrey Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    15 Dec 2022

  • REC opinion

    Favourable Opinion