The Lived Experience of Individuals with a Tracheostomy and their Caregivers: A Qualitative Analysis

Objective To explore the lived experiences of individuals with tracheostomies, their caregivers, and healthcare professionals to identify challenges and inform patient-centered care efforts. Study Design A qualitative survey with thematic analysis. Setting Global Tracheostomy Collaborative learning community. Methods 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’s six-phase methodology, with independent coding, iterative refinement, reflexive journaling, triangulation, and peer debriefing. Results 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. Conclusion 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.