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

Rikke Louise Stenkjaer; Ingrid Egerod; Mala Moszkowicz; Marie Oxenbøll Collet; Janne Weis; Erwin Ista; Gorm Greisen; Suzanne Forsyth Herling

doi:10.1111/jan.16048

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

J Adv Nurs. 2024 Jan 7. doi: 10.1111/jan.16048. Online ahead of print.

Authors

Rikke Louise Stenkjaer¹, Ingrid Egerod², Mala Moszkowicz^{3

4}, Marie Oxenbøll Collet², Janne Weis¹, Erwin Ista⁵, Gorm Greisen¹, Suzanne Forsyth Herling⁶

Affiliations

¹ Department of Intensive Care for Infants and Toddlers, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.
² Department of Intensive Care, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.
³ Child and Adolescent Mental Health, Copenhagen University Hospital-Mental Health Services CPH, Copenhagen, Denmark.
⁴ Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark.
⁵ Division of Pediatric Intensive Care, Department of Neonatal and Pediatric Intensive Care, Erasmus MC-Sophia Children's Hospital, University Medical Center Rotterdam, Rotterdam, The Netherlands.
⁶ Department of Neuroanaesthesiology, Neuroscience Centre, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark.

PMID: 38186225
DOI: 10.1111/jan.16048

Abstract

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.

Keywords: PICU; critically ill children; delirium; experiences; management; non-pharmacologic intervention; paediatric delirium; paediatric intensive care unit; parent perspectives; qualitative study.

Abstract

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