Life after Tracheostomy: Patient and Family Perspectives on Teaching, Transitions, and Multidisciplinary Teams.

OBJECTIVE: To report patient/family experiences and outcomes after tracheostomy STUDY
DESIGN: International survey of patients and families with tracheostomy.
SETTING: Collaboration of the Patient Safety and Quality Improvement Committee of the American Academy of Otolaryngology-Head and Neck Surgery and the Global Tracheostomy Collaborative.
METHODS: A 50-item survey was developed with multistakeholder collaboration. The survey was disseminated via international social networks used by patients with a tracheostomy and their families. Qualitative and quantitative data were analyzed.
RESULTS: Of 220 respondents, 90% cared for a pediatric patient with a tracheostomy. Only 48% of respondents felt "very prepared" at time of discharge, and 11% did not receive emergency preparedness training prior to discharge. Home nursing needs were inadequately met in 17% of families, with resulting difficulties shortly after discharge; 14% sought emergent care within 1 week of discharge. Nearly half of respondents indicated a desire to have met with a patient with a tracheostomy prior to surgery but were not offered that opportunity. Fragmented care or limited teamwork was reported by 32% of respondents, whereas tracheotomy care was described as "integrated" or "maximally integrated" for 67%.
CONCLUSION: While many families report satisfaction with tracheostomy care, opportunities remain for improving care. This study highlights the importance of teaching, teamwork, and smoothing transition from the hospital. Potential quality improvement areas include standardizing tracheostomy teaching for routine and emergency needs and optimizing postdischarge support and coordination. Prior to surgery, connecting families to people with a tracheostomy may also be beneficial. © American Academy of Otolaryngology—Head and Neck Surgery Foundation 2015.