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The parent perspective on paediatric delirium and an associated care bundle: A qualitative study
Rikke Louise Stenkjaer1, Ingrid Egerod2, Mala Moszkowicz3,4
1Department of Intensive Care for Infants and Toddlers, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.
Insights
Parents observed changes in their critically ill child with delirium, causing fear. They found the delirium management bundle relevant but desired more information and engagement in their child's care.
Area of Science:
- Pediatric Intensive Care
- Critical Care Medicine
- Child Psychology
Background:
- Delirium is a common complication in critically ill children.
- Parental experiences and perspectives on pediatric delirium (PD) are crucial for holistic care.
- Understanding parental perceptions of delirium management is essential for improving care quality.
Purpose of the Study:
- To explore parental experiences of their child's delirium in a pediatric intensive care unit (PICU).
- To evaluate parental views on a delirium management bundle for critically ill children.
- To identify areas for improvement in PD care from a parental perspective.
Main Methods:
- Qualitative exploratory descriptive study.
- Semi-structured interviews with 16 parents of 12 critically ill children diagnosed with delirium.
- Reflexive thematic analysis of interview data.
Main Results:
- Parents identified changes in their child, experienced fear of long-term consequences, and offered insights into the delirium management bundle.
- Five key themes emerged: recognizing distress, observing changes, fearing outcomes, contributing to the bundle, and family engagement.
- Parents found the bundle relevant but emphasized the need for individualized application and increased family involvement.
Conclusions:
- Parents can detect subtle and overt signs of delirium in their critically ill children, leading to significant distress.
- The delirium management bundle was perceived as valuable, yet parents requested more information and greater engagement in their child's care.
- This study highlights the importance of incorporating parental perspectives to enhance the management of pediatric delirium in the PICU.
Aims:
To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle.
Design:
We conducted a qualitative exploratory descriptive study using semi-structured individual or dyad interviews.
Methods:
Twelve 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.
Findings:
We 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.
Conclusion:
The 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.
Impact:
This 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 Method:
The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting.
Patient Or Public Contribution:
No 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.
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