TY - JOUR

T1 - The parent perspective on paediatric delirium and an associated care bundle

T2 - A qualitative study

AU - Stenkjaer, Rikke Louise

AU - Egerod, Ingrid

AU - Moszkowicz, Mala

AU - Collet, Marie Oxenbøll

AU - Weis, Janne

AU - Ista, Erwin

AU - Greisen, Gorm

AU - Herling, Suzanne Forsyth

N1 - Publisher Copyright: © 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.

PY - 2024

Y1 - 2024

N2 - 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.

AB - 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.

KW - critically ill children

KW - delirium

KW - experiences

KW - management

KW - non-pharmacologic intervention

KW - paediatric delirium

KW - paediatric intensive care unit

KW - parent perspectives

KW - PICU

KW - qualitative study

U2 - 10.1111/jan.16048

DO - 10.1111/jan.16048

M3 - Journal article

C2 - 38186225

AN - SCOPUS:85181513410

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

ER -