Table 3:

Themes Describing Parental Regret Regarding the Tracheostomy Decision

Theme	Sample Quotes
Uninformed	“We quickly arrived at what the decision needed to be. Our problem was always more around how the ‘choices’ were presented and the information that was held back” “I am not really certain that the tracheostomy was the best decision for my son based on the information given to us.”
Regret Timing	“I almost wish we had seen the scope sooner, so she could have been on the road to recovery earlier. The not knowing made things difficult” “Though I am very confident we made the right choice to get a tracheostomy, sometimes I wonder if we should have given my child more time to develop the airway protective reflexes.”
Regret: Medical Care	“My daughter has been caused much more harm than good with her trach and nurses need more training with trach care, as well a respiratory therapists”
No Regret	‘These questions don’t really apply because my son is doing much better’ “Without the trach, my child would have suffered and probably failed to thrive. It has been a blessing. It was a very, very difficult decision to make, and still there is daily angst just to make sure it is clear, clean, and in place, but I have no regrets.” “Now that my son has a diagnosis, his need for a long-term tracheostomy has been confirmed. It was an incredibly difficult and painful decision, but it has allowed my son to thrive at home, and avoid repeat hospitalizations.”