• William A Gower, Shannon L Golden, King Nancy M P NMP Department of Social Science and Health Policy, Wake Forest University (SL Golden, NMP King, and S Nageswaran), Winston-Salem, NC., and Savithri Nageswaran.
• Department of Pediatrics, Wake Forest School of Medicine (WA Gower and S Nageswaran), Winston-Salem, NC; Department of Pediatrics, University of North Carolina School of Medicine (WA Gower), Chapel Hill, NC.
• Acad Pediatr. 2020 Nov 1; 20 (8): 1094-1100.

ObjectiveCaregivers of children with medical complexity (CMC) face decisions about tracheostomy. The objectives of this paper are to identify facilitators and barriers to tracheostomy decision-making (TDM) process for CMC.MethodsUsing phenomenology as its methodologic orientation, this qualitative study conducted in North Carolina between 2013 and 2015 consists of semistructured interviews with 56 caregivers of 41 CMC who received tracheostomies, and 5 focus groups of 33 health care providers (HCP) at a tertiary care children's hospital involved in TDM for CMC. Participants were asked to share their experiences and perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes as is consistent with thematic content analysis.ResultsFive themes were identified. 1) Caregivers perceived decision about tracheostomy for their children was theirs to make. 2) Strategies that increased caregivers' active participation in the TDM process facilitated the TDM process. 3) Caregiver emotional stress and lack of understanding about tracheostomy were barriers. 4) Good HCP communication during the TDM process was valued; poor communication was a barrier. 5) Collaboration among HCP-facilitated TDM, especially when nurses were involved, whereas fragmentation in care was a barrier.ConclusionsCaregivers take a primary role in the TDM process. Many caregiver and HCP-level facilitators and barriers for TDM exist. Augmenting the facilitators and reducing the barriers identified in this study could improve the TDM process for CMC.Copyright © 2020 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

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