{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T14:33:24Z","timestamp":1775140404844,"version":"3.50.1"},"reference-count":70,"publisher":"Global Tracheostomy Collaborative","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"\n Objective<\/jats:title>\n To explore the lived experiences of individuals with tracheostomies, their caregivers, and healthcare professionals to identify challenges and inform patient-centered care efforts.<\/jats:p>\n <\/jats:sec>\n \n Study Design<\/jats:title>\n A qualitative survey with thematic analysis.<\/jats:p>\n <\/jats:sec>\n \n Setting<\/jats:title>\n Global Tracheostomy Collaborative learning community.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Participants were recruited via a purposive online survey featuring open-ended questions designed to capture diverse stakeholder perspectives. A phenomenological approach within a constructivist-interpretivist paradigm guided the study, employing the International Classification of Functioning framework to examine biopsychosocial dimensions of tracheostomy care. Thematic analysis followed Braun and Clarke\u2019s six-phase methodology, with independent coding, iterative refinement, reflexive journaling, triangulation, and peer debriefing.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n A total of 191 participants from 17 countries contributed to the study, revealing three overarching themes. (1) Tracheostomy as Lifeline and Vulnerability: Participants described tracheostomy as life-saving yet associated with social isolation, communication barriers, stigma, and supply shortages. (2) Dual-Sided Risk Perceptions: Individuals expressed fears about infection risks and stigma, while caregivers and healthcare professionals highlighted concerns about tracheostomy as a potential transmission risk. (3) Disrupted Care and Team Function: Challenges included limited multidisciplinary support, restricted access to critical supplies, and constrained care protocols, which affected patient and caregiver safety and well-being.<\/jats:p>\n <\/jats:sec>\n \n Conclusion<\/jats:title>\n Tracheostomy patients face compounded vulnerabilities, highlighting the need for holistic, patient-centered care models that address physical, social, and emotional challenges. Inclusive and adaptive healthcare practices are essential to mitigate risks, reduce stigma, and enhance the quality of life for individuals with a tracheostomy and caregivers, especially during healthcare crises.<\/jats:p>\n <\/jats:sec>","DOI":"10.62905\/001c.147784","type":"journal-article","created":{"date-parts":[[2025,12,12]],"date-time":"2025-12-12T01:13:54Z","timestamp":1765502034000},"source":"Crossref","is-referenced-by-count":1,"title":["The Lived Experience of Individuals with a Tracheostomy and their Caregivers: A Qualitative Analysis"],"prefix":"10.62905","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4926-0957","authenticated-orcid":false,"given":"Michael J.","family":"Brenner","sequence":"first","affiliation":[{"name":"Associate Professor, Department of Otolaryngology-Head & Neck Surgery, University of Michigan Medical School, Ann Arbor, MI, USA"},{"name":"Chair, Global Tracheostomy Collaborative, Chicago, IL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chandler H.","family":"Moser","sequence":"additional","affiliation":[{"name":"Chief, Center for Nursing Science and Clinical Inquiry, Madigan Army Medical Center, Joint Base Lewis-McChord, WA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erin","family":"Ward","sequence":"additional","affiliation":[{"name":"Parent, Family Voice, Global Tracheostomy Collaborative, Chicago, IL, USA"},{"name":"Family Liaison, Multidisciplinary Tracheostomy Team, Boston Children\u2019s Hospital, Boston, MA, USA"},{"name":"MTM-CNM Family Connection, Inc., Methuen, MA, USA"},{"name":"Co-Founder, TrachCare, Inc."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1233-4502","authenticated-orcid":false,"given":"Ethan D.","family":"Sperry","sequence":"additional","affiliation":[{"name":"Patient voice, Resident Physician, Pediatrics and Medical Genetics, Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, OH, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Barbara","family":"Bosworth","sequence":"additional","affiliation":[{"name":"Parent, Family Voice, Global Tracheostomy Collaborative, Chicago, IL, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amy","family":"Freeman-Sanderson","sequence":"additional","affiliation":[{"name":"Graduate School of Health, University of Technology Sydney, NSW, Australia Royal Prince Alfred Hospital, Sydney, NSW, Australia"},{"name":"Critical Care Division, The George Institute for Global Health, Sydney, NSW, Australia"},{"name":"Australian and New Zealand Intensive Care Research Centre (ANZIC-RC), School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia"},{"name":"Speech Pathology Department, Royal Prince Alfred Hospital, Sydney, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Allgood","sequence":"additional","affiliation":[{"name":"Assistant Professor, Johns Hopkins School of Nursing, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2260-1080","authenticated-orcid":true,"given":"Vinciya","family":"Pandian","sequence":"additional","affiliation":[{"name":"Associate Dean for Graduate Education and Professor of Nursing, Ross and Carol Nese College of Nursing, Penn State University, University Park, PA, USA"},{"name":"Executive Director of Immersive Learning and Digital Innovation, Ross and Carol Nese College of Nursing, Penn State University, University Park, PA, USA"},{"name":"Professor of Otolaryngology-Head and Neck Surgery, College of Medicine, Penn State University, University Park, PA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"49560","published-online":{"date-parts":[[2025,12,1]]},"reference":[{"issue":"2","key":"ref1","doi-asserted-by":"publisher","first-page":"104179","DOI":"10.1016\/j.amjoto.2023.104179","article-title":"Tracheostomy-related durable medical equipment: Insurance coverage, gaps, and barriers","volume":"45","author":"P. 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