A Systematic Review of Patient and Caregiver Experiences with a Tracheostomy

Background A tracheostomy is a surgically created opening through the anterior neck tissues and the trachea, into which a tube is inserted. Despite its influence on basic human needs such as respiration, communication and nutrition, little is known about the impact of tracheostomy on patients and their caregivers or what could be done to enable better care and quality of life (QoL) for these individuals. Objective The aim of this review was to better understand the current knowledge related to the experience and QoL of adults living with a tracheostomy and their caregivers so as to be able to improve these experiences. Method A systematic review of the English-language, peer-reviewed literature was conducted in PubMed, Scopus, PsychINFO, Google Scholar, and CINAHL databases. Articles were eligible if they included adult patient or lay caregiver-reported experiences of tracheostomy. Results Overall, 1080 articles were identified and 17 eligible for inclusion. Fourteen articles reported on experiences of tracheostomy patients, while three focused on those of their caregivers. Studies were conducted in the home setting (n = 5), on a hospital ward (n = 4), in an intensive care unit (n = 3), in an outpatient clinic (n = 3), in a rehab facility (n = 1), and online (n = 1). Patients and their caregivers reported a range of mostly negative experiences related to the care, support, and management of a tracheostomy, speech and communication, wellbeing and QoL, disfigurement and body image, and stigma and social withdrawal. Conclusion Few studies have published data on the patient and caregiver experiences with tracheostomy, especially in the community setting. There is a need to better understand these experiences in order to be able to formulate strategies and provide resources to improve the quality of care and overall QoL of patients with a tracheostomy and their caregivers in-hospital and in the community.