The parent perspective on paediatric delirium and an associated care bundle: A qualitative study

Abstract

AbstractAimsTo explore how parents experienced their child with delirium and how parents viewed our delirium management bundle.DesignWe conducted a qualitative exploratory descriptive study using semi‐structured individual or dyad interviews.MethodsTwelve semi‐structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis.FindingsWe generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long‐term consequences, (4) adding insight to the bundle, and (5) family engagement.ConclusionThe parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium.ImpactThis paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit.Reporting MethodThe consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting.Patient or Public ContributionNo patient or public contribution to the research design.What does this Paper Contribute to the Wider Global Community? ‐ It increases awareness of the parent's perspective on PD in critically ill children. ‐ It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage. ‐ It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child.