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.

Original languageEnglish
JournalJournal of Perinatology
StateAccepted/In press - 2023


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