Table 4:

Summary of Themes and Examples

Theme	Definition	Patient and family examples
Insurance coverage for DME	Evidence of interactions with insurance for coverage of trach supplies	“It was clear to me they didn’t understand what a trach even was” “Anytime I tried to work with them, it was extremely challenging… you just end up with the burden of all the administrative tasks, everything falls on the patient” “I went through three rounds of appeals over six and a half months” (On the difficulty of obtaining a new humidifier)
COVID-related challenges	Evidence of disruptions in trach care and their impact on patients during the COVID-19 pandemic	“Most of the concerns trach patients were shared were non-emergency, but concerns that were necessary for their routine survival. However, they weren’t considered important enough to warrant a visit to the ED.” “A lot of trach patients are on Medicaid and didn’t have reliable physician coverage and rely on ED’s. During COVID the trach violated hospital aerosolization policies and there often wasn’t an available isolation room so patients were turned away” “Patients had serious, but elective surgeries cancelled due to lack of operating room equipment (filters for suctions, etc.)” “Supply availability was a big problem, patients would spread out their trach changes to once every few months, and then their trach wouldn’t be in stock so they’d have to use a different trach, and the infrequent changes with new equipment resulted in more bleeds and more ER visits, which were challenging in COVID”
Insurance guiding medical care	Evidence of trach care being altered to fit within the context of insurance coverage	“Patients get home and their get one trach every month, rather than one every two weeks per prescription which leads to an internal dilemma of should I call my doctor and can they help?” “The most common thing is where the provider wants a certain thing done at a certain frequency (trach changes biweekly) and the insurance company will only authorize a trach change once a month, and an internal dilemma develops where the patient has been told that a change biweekly is best for your health yet one a month is all that’s available through insurance.” And the patients get really frustrated when the system breaks down, eventually their physician changes the prescription to fit within the insurance guidelines and then the patients sees their providers authoritative opinion altered by billing codes”
Dysfunctional healthcare provider relationship	Impressions of the challenge of trach care between patients and their providers.	“So when I had my specific little change it was like my physician didn’t know how to management to EMR navigation to make little adjustments which leads patients to individualize and seek outside options.” On Trach Humidification: “There are multitudes of options, however patients are often only presented with one, and when they want to try other options they meet a lot of resistance within the electronic medical record ordering environment”
Opting out of conventional options	Evidence of patients seeking out trach supplies outside of the DME Insurance environment	“I have not gotten the DME that I currently have through insurance, I just ordered my stuff on Amazon. As do many other people that I know because they (Insurance companies) won’t work with you. If they don’t know you they don’t care”
Trust in Provider	Impression of provider trust due to insurance and provider mismatch.	On Insurance guiding care: “When your doctor changed their mind based on what an insurance company told them you star to lose faith in the medical side” “No one has faith in insurance but when you start to lose faith in your doctor, their the only person in your life who is treating your medical problems and when their authoritative opinion is wiped away by a random billing code it can really damage your relationship with them.”