Shared decision-making
Why are we doing this study?
Following several high-profile court cases involving disagreements in the care of critically ill children in England, the Nuffield Council on Bioethics undertook an independent review of the causes. The recommendations from the review aim towards creating an enabling environment where decisions in the care of critically ill children are made more quickly, collaboratively, and compassionately between families and health professionals (known as ‘shared decision-making’). The Nuffield Council on Bioethics report also found that there is substantially more published evidence on the impact of disagreements from the perspective of healthcare professionals than from the perspective of families of critically ill children.
This project will help the DHSC to better understand the experiences of families and children (where possible) in navigating disagreements, help develop mechanisms that could facilitate shared decision-making and identify best practices where this exists. The project will also highlight any gaps in knowledge and/or priority questions to help direct the commissioning of future research studies through NIHR.
Aims
This project will summarise existing evidence about parent and child experiences of shared decision-making in the care of critically ill children. We will identify gaps in the evidence to highlight key areas and priorities for further research, including specific groups of children and families and points in care pathways.
Methods
We will identify and summarise the published evidence about parents’ and children’s/young people’s experiences of shared decision-making where a child has a life-limiting or life-threatening condition and/or a child is critically ill (scoping review). The review will also identify gaps in this evidence. We will hold three PPI workshops with an existing group of parents whose child has or has had a life-limiting or life-threatening condition or who became suddenly critically ill (including bereaved parents) to inform aspects of the scoping review and subsequent analysis.
Principal Investigators
Professor of Palliative Care and Child Health
Associate Professor in Child and Family Policy, University College London
Investigators
Research Programme Coordination Assistant
Research Assistant, University College London