Through Their Eyes: A Patient-Centric Study on Challenges, Risks, and Resilience With a Tracheostomy

Introduction: The COVID-19 pandemic had profound impacts on individuals with tracheostomy. This study highlights their unique challenges, heightened risks, and experiences of social isolation. Tracheostomy, a life-saving procedure for individuals requiring prolonged mechanical ventilation or facing upper airway obstruction, has seen a surge in demand during the pandemic. Our study delves into the perspectives of 191 participants, including tracheostomy patients, caregivers, and healthcare providers from diverse geographical regions.

Methods: Participatory mixed methods design with open-ended questions and semi-structured interviews. The survey, designed using Qualtrics software with input from community stakeholders, collected anonymous responses from a convenience sample recruited through the Global Tracheostomy Collaborative, employing a rigorous thematic analysis to derive meaningful insights.

Results: Three overarching themes emerged from thematic analysis. First, participants acknowledged the life-saving nature of tracheostomy but expressed heightened vulnerability due to social isolation, communication barriers, and fears of maintaining ventilation during a pandemic. Second, the study unveiled a dual-sided risk perception, where tracheostomy increased susceptibility to COVID-19 transmission, both in healthcare settings and the community, while posing risks of infection from healthcare environments. Finally, disruptions in healthcare access were evident, with supply chain issues, limited multidisciplinary care, and policy changes exacerbating the challenges faced by this population.

Conclusions: The findings underscore the need for comprehensive support systems for individuals with tracheostomy, addressing their mental health needs, communication barriers, and equitable access to essential resources during pandemics.