Table 4:

Themes Describing Influencers on Quality of Life after the Tracheostomy Decision

Theme	Sample Quotes
Parent Psychosocial Wellbeing	“Looking at the crib last week was saddening because when you go through pregnancy you expect things to be okay after” “I cry a lot. It is hard, so hard.”
Financial Burden	“The financial concerns are also overwhelming, even with the benefits of health insurance” “I worry about money, but not because of caring.”
Medical Fragility	“It’s not the role of caregiver that’s frustrating, it is the fragility of the prognosis. I hold my breath all day long waiting for the next ‘issue’ positive or negative. It’s completely unsettling” “Having a child who is medically fragile is one of the most difficult challenges of my life. It is a sacrifice that it absolutely worth it, but it is not a decision that should be taken lightly or without careful thought.”
Overwhelming Medical Care	“Adding the trach just adds a new layer of responsibility and stress. Learning to care can be exhausting and overwhelming” “I wish I had known how difficult it is to find qualified nursing for the home, and I wish I had a better idea of how Medicaid works. Had I known that we wouldn’t have night nurses due to a lack of availability I could have planned differently.”