Amplifying patient voices amid pandemic: Perspectives on tracheostomy care, communication, and connection

Vinciya Pandian, Brandon S. Hopkins, Christina J. Yang, Erin Ward, Ethan D. Sperry, Ovais Khalil, Prue Gregson, Lucy Bonakdar, Jenny Messer, Sally Messer, Gabby Chessels, Barbara Bosworth, Diane M. Randall, Amy Freeman-Sanderson, Brendan A. McGrath, Michael J. Brenner

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: To investigate perspectives of patients, family members, caregivers (PFC), and healthcare professionals (HCP) on tracheostomy care during the COVID-19 pandemic. Methods: The cross-sectional survey investigating barriers and facilitators to tracheostomy care was collaboratively developed by patients, family members, nurses, speech-language pathologists, respiratory care practitioners, physicians, and surgeons. The survey was distributed to the Global Tracheostomy Collaborative's learning community, and responses were analyzed. Results: Survey respondents (n = 191) from 17 countries included individuals with a tracheostomy (85 [45 %]), families/caregivers (43 [22 %]), and diverse HCP (63 [33.0 %]). Overall, 94 % of respondents reported concern that patients with tracheostomy were at increased risk of critical illness from SARS-CoV-2 infection and COVID-19; 93 % reported fear or anxiety. With respect to prioritization of care, 38 % of PFC versus 16 % of HCP reported concern that patients with tracheostomies might not be valued or prioritized (p = 0.002). Respondents also differed in fear of contracting COVID-19 (69 % PFC vs. 49 % HCP group, p = 0.009); concern for hospitalization (55.5 % PFC vs. 27 % HCP, p < 0.001); access to medical personnel (34 % PFC vs. 14 % HCP, p = 0.005); and concern about canceled appointments (62 % PFC vs. 41 % HCP, p = 0.01). Respondents from both groups reported severe stress and fatigue, sleep deprivation, lack of breaks, and lack of support (70 % PFC vs. 65 % HCP, p = 0.54). Virtual telecare seldom met perceived needs. Conclusion: PFC with a tracheostomy perceived most risks more acutely than HCP in this global sample. Broad stakeholder engagement is necessary to achieve creative, patient-driven solutions to maintain connection, communication, and access for patients with a tracheostomy.

Original languageEnglish (US)
Article number103525
JournalAmerican Journal of Otolaryngology - Head and Neck Medicine and Surgery
Volume43
Issue number5
DOIs
StatePublished - Sep 1 2022

Keywords

  • Advocacy
  • Anxiety
  • Caregivers
  • Communication
  • Comorbidities
  • Coronavirus
  • COVID-19
  • Crisis Standards of Care
  • Depression
  • Head and neck cancer
  • Health care professionals
  • Healthcare access
  • Nursing
  • Patient experience
  • Patient-centered care
  • Patients
  • Quality improvement
  • Rationing
  • Resource scarcity
  • Respiratory care practitioner
  • Respiratory therapy
  • Safety
  • SARS-CoV-2
  • Speech-language pathology
  • Tracheostomy
  • Tracheotomy

ASJC Scopus subject areas

  • Otorhinolaryngology

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