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Evaluating caregiver-clinician communication for tracheostomy placement in the neonatal intensive care unit: a qualitative inquiry

Abstract

Objective

Identify stakeholders’ tracheostomy decision-making information priorities in the Neonatal Intensive Care Unit (NICU).

Study design

English-speaking caregivers and clinicians who participated in NICU tracheostomy discussions between January 2017 and December 2021 were eligible. They reviewed a pediatric tracheostomy communication guide prior to meeting. Interviews focused on tracheostomy decision-making experiences, communication preferences, and guide perceptions. Interviews were recorded, transcribed, and analyzed using iterative inductive/deductive coding to inform thematic analysis.

Results

Ten caregivers and nine clinicians were interviewed. Caregivers were surprised by the severity of their child’s diagnosis and the intensive home care required, but proceeded with tracheostomy because it was the only chance for survival. All recommended that tracheostomy information be introduced early and in phases. Inadequate communication limited caregivers’ understanding of post-surgical care and discharge requirements. All felt a guide could standardize communication.

Conclusions

Caregivers seek detailed information regarding expectations after tracheostomy placement in the NICU and at home.

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Data availability

The qualitative datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request.

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Acknowledgements

The chosen decision guide is being adapted with permission from: HSC Winnipeg Children’s Hospital. Child Tracheostomy Decision Guide, 2011.

Funding

This project was funded in whole or in part by St. Louis Children’s Hospital, and by the Washington University Institute of Clinical and Translational Sciences which is, in part, supported by the NIH/National Center for Advancing Translational Sciences (NCATS), CTSA grant #UL1 TR002345.

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Authors and Affiliations

Authors

Contributions

KB designed the study, acquired funding, completed investigation, analyzed, and interpreted data, wrote, and edited the manuscript. KC completed investigation, analyzed, and interpreted the data, wrote, and edited the manuscript. MP designed the study, supervised investigation, analyzed and interpreted data, and edited the manuscript. SB designed the study and edited the manuscript. AH designed the study, acquired funding, supervised investigation, analyzed, and interpreted data, and edited the manuscript.

Corresponding author

Correspondence to Kylie M. Bushroe.

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Competing interests

The author, MP, was a consultant for UCB Biopharma in 2022 on a topic unrelated to this manuscript.

Ethical approval

The study protocol #202109163 was reviewed and approved by the Washington University in St. Louis Institutional Review Board (IRB). Appropriate consent was obtained from all participants prior to participation.

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Bushroe, K.M., Crisp, K.D., Politi, M.C. et al. Evaluating caregiver-clinician communication for tracheostomy placement in the neonatal intensive care unit: a qualitative inquiry. J Perinatol (2023). https://doi.org/10.1038/s41372-023-01793-3

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