Unmet educational needs and expectations among tracheostomy recipients.

Objective: This study seeks to better understand unmet educational needs and treatment expectations in individuals with a tracheostomy.

Study design: Retrospective, cross-sectional survey.

Methods: A survey was distributed to individuals who received a tracheostomy at a tertiary care center in the last five years as well as in Facebook support groups for tracheostomy and head and neck cancer patients. The survey focused on tracheostomy education, satisfaction with care, and gaps in treatment plan understanding. Primary outcome was rate of tracheostomy peri-operative experience being on-par with expectations.

Results: Among 83 respondents, only report of pre-operative speech (p = 0.024) and swallow (p = 0.019) discussions were associated with peri-operative experience being on-par with expectations. Respondents were more likely to report importance of counseling regarding psychological well-being (p < 0.001) and post-operative social integration/interaction (p < 0.001) than they were to report receiving focused counseling about these topics. Qualitative analysis demonstrated the most frequently missing components of understanding of treatment plans included post-operative care and the post-operative experience (n = 19, 40.4 % each). Reasons for treatment not meeting expectations included lack of communication/education (n = 15, 39.5 %) and experience being worse than expected (n = 8, 21.1 %). Individuals frequently wanted more details of the experience of living with a tracheostomy (n = 25, 42.6 %) and details about tracheostomy care (n = 10, 16.4 %).

Conclusion: This study demonstrates significant gaps in informational needs for individuals receiving a tracheostomy, emphasizing the importance of guideline-directed tracheostomy counseling. Specifically, more information is needed regarding expected post-surgical experience, tracheostomy care and maintenance, psychosocial wellbeing, and communication support.