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Title: Amplifying patient voices amid pandemic: Perspectives on tracheostomy care, communication, and connection.
Austin Authors: Pandian, Vinciya;Hopkins, Brandon S;Yang, Christina J;Ward, Erin;Sperry, Ethan D;Khalil, Ovais;Gregson, Prue;Bonakdar, Lucy;Messer, Jenny;Messer, Sally;Chessels, Gabby;Bosworth, Barbara;Randall, Diane M;Freeman-Sanderson, Amy;McGrath, Brendan A;Brenner, Michael J
Affiliation: Immersive Learning and Digital Innovation, Johns Hopkins School of Nursing, Baltimore, MD, USA..
Outcomes After Critical Illness and Surgery (OACIS) Research Group, Johns Hopkins University, Baltimore, MD, USA..
Family Liaison, Multidisciplinary Tracheostomy Team, Boston Children's Hospital, Boston, MA, USA..
MTM-CNM Family Connection, Inc., Methuen, MA, USA..
Critical Care Division, The George Institute for Global Health, Sydney, NSW, Australia..
Graduate School of Health, University of Technology, Sydney, NSW, Australia..
Department of Otolaryngology, Head and Neck Surgery, The Cleveland Clinic, Cleveland, OH, USA..
Department of Otorhinolaryngology-Head and Neck Surgery, Albert Einstein School of Medicine/Montefiore Medical Center, Bronx, New York, NY, USA..
Global Tracheostomy Collaborative, Raleigh, NC, USA..
Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States of America..
Johns Hopkins University School of Nursing, Baltimore, MD, USA..
Tracheostomy Review and Management Service
Manchester Academic Critical Care, Division of Infection, Immunity and Respiratory Medicine, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, United Kingdom..
Memorial Regional Health System, Fort Lauderdale, FL, USA..
Anaesthesia & Intensive Care Medicine, Manchester University Hospital NHS Foundation Trust, Wythenshawe, Manchester, United Kingdom..
Department of Otolaryngology-Head & Neck Surgery, University of Michigan Medical Center, Ann Arbor, MI, USA..
Issue Date: 7-Jun-2022 2022
Publication information: American Journal of Otolaryngology 2022; 43(5): 103525
Abstract: To investigate perspectives of patients, family members, caregivers (PFC), and healthcare professionals (HCP) on tracheostomy care during the COVID-19 pandemic. 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. 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. 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.
DOI: 10.1016/j.amjoto.2022.103525
Journal: American journal of otolaryngology
PubMed URL: 35717856
PubMed URL:
Type: Journal Article
Subjects: Advocacy
Crisis Standards of Care
Head and neck cancer
Health care professionals
Healthcare access
Patient experience
Patient-centered care
Quality improvement
Resource scarcity
Respiratory care practitioner
Respiratory therapy
Speech-language pathology
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