Exploring families' perceptions of their needs during the acute stage of severe traumatic brain injury in childhood

Annually 600 children are admitted to paediatric intensive care units (PICU) in the UK with Traumatic Brain Injury (TBI) and it is the leading cause of acquired disability in childhood. Childhood TBI may lead to parental stress and challenge family functioning and studies suggest that families have unmet information and support needs. However, the particular experiences and needs of families during the acute phase of a childhood TBI have been under-researched. This study aims to explore parents’ perceptions of their support needs during the acute stage of a traumatic brain injury; examine parents involvement in treatment decision making (including critical care choices); and identify how parents’ information and support needs during the acute stage could be met. This presentation outlines the development work for this qualitative study (working with a parent advisory group to develop the parent information leaflet and topic guide) and the benefits of patient and public involvement in research.