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Responsive Facility: Parents' experiences of shared decision-making in the care of critically ill children
Dates
Febrary 2025 – October 2025
Research Team
Professor Jenny Woodman - UCL (project co-lead), Professor Lorna Fraser - KCL (project co-lead), Georgina MacDonald - KCL. Dr Diane Stoianov - UCL.
Why we are doing this study
Following several high-profile court cases involving disagreements in the care of critically ill children in England, Nuffield Council on Bioethics undertook an independent review into the causes of such disagreements. 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’). 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 practice 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.
Why this is important?
The Nuffield Council on Bioethics report 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. To meet the Nuffield Council on Bioethics recommendation of understanding and improving the environment where decisions in the care of critically ill children are made, we will summarise existing literature and include the perspectives of a diverse range of parents with relevant lived experiencThere has been a very steep rise in the prevalence of life-limiting and life-threatening conditions in children (250% increase between 2001 and 2018). The population of children in whose care disagreements may occur is very broad in terms of age (perinatal to young adulthood), and their health-conditions include a broad range of underlying life-limiting conditions as well as sudden causes of critical illness such as trauma. This means that our understanding of parents’ experiences may be better in some populations than others.
What we will do
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.
What we hope to find out
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.
