The Lived Experience of Delirium in a Critically Ill Child: A Narrative Study

While the negative experience of intensive care delirium has been established in adults, paediatric delirium (PD) is increasingly being recognized internationally. Knowledge, however, is still lacking regarding the experience of delirium in critically ill children. Therefore, we wish to provide insight into the subjective experience of delirium to better understand the children's perspective and enable the development of strategies to support children and their parents during and after the delirium episode.

We aimed to describe the lived experience of delirium in a paediatric intensive care unit survivor. Our research question was: How does a child make sense of delirium after critical illness?

We interviewed 16-year-old Eric 10 months after discharge from the intensive care unit, using Frank's narrative theory to analyse Eric's narrative and performing thematic analysis to further interpret his experiences.

We identified Eric's story as a Quest narrative. According to Frank's theory, Eric uses his narrative to understand his experiences and perhaps to help others. We identified the following themes: Being lost, being pursued, being paralysed, and being back. During delirium, Eric lost control of reality during delusions and hallucinations. He experienced being pursued, being paralysed, and finally regaining his sense of reality. After discharge, Eric told and retold his story to his mother. Together, they developed a version of the story that was used to develop strategies to deal with delirium in the event of future admissions.

Similarly to adults, children experience the distress of delusions and hallucinations during ICU delirium. The adolescent in our case was able to reflect on and suggest explanations for his delusional experiences. Mother and child prepared strategies to manage delirium during future admissions.