Table 3 Representative patient interview quotes by theme

Medication management

I've got this little bag I put in the dishwasher, and you can put it [nebulizer parts] in the dishwasher, and I just stick stuff in the dishwasher and wash it

It’s actually very– I thought it was going to be so much more complicated than what it was actually. The one that they gave me is very easy to use

We didn't know you were supposed to change the mask, and where do we get another mask?

Well, we [provider and patient] determined a protocol of care when I feel like I'm having one [COPD exacerbation] coming on that ordinarily would send me to the ER. First use the albuterol inhaler, the rescue inhaler twice, and if that doesn't work get home if I'm out or just start up my nebulizer and do one of those treatments, and if it still doesn't work get my butt to the hospital

Health care system interactions

My doctor, I don't feel that he has the time. I feel like you're in and out, and I just don't think he’s a teacher

I know that there was a lot of different things about how ill I was, but nobody discussed anything with me that I can remember

Quality of life

I'm sure that there has been a time or three when I wasn't practicing good self-care, but it's the exception and not the rule. Do you know what I mean? If the situation were dire enough there would be no question. I'd take the treatment. But if I think that it's rather minor and I'm– because I still live with PTSD. That's major milestone for me to be able to practice continuous self-care. It's part of the symptoms, it's part of the problem, and working through those things is always gonna be part of the process

[Regarding mood interfering with COPD treatment] Yes, it has. You know I'm trying to, like my granddaughter was getting over COVID, it's just sometimes a lot of things get stressful, and sometimes I'm just too exhausted as the day is over to do anything. I've done it with that. You know I have a daughter that was murdered, she was murdered September, so her death date is coming up and sometimes you know that get to me where it just I go into a little depression, or, you know it's just certain things

Health care access

No, it’s [nebulizer and COPD medication] all fully covered by insurance, so

Not really, I think it's, with my co-pay it's manageable

I do want to let you know too when I was in the hospital, they did give me a new nebulizer

Caregiver support

No, I do it myself. She’s [patient’s mom] just there in case something happens

He [patient’s son] knows exactly how to use it. If I can't get to it, like I'll explain to you. On like the week before Thanksgiving I was having an attack and he knew it and I was upstairs, and my own son, it was, this is odd, my hands clamped shut where I could not open my fingers up or my thumb, I could not open my hands up at all. So it's a good thing that he knew how to use that because he got it all set up and he gave me the nebulizer treatment and it didn't do anything and then we did another one and then he drove me to the hospital

Well, I don't walk, that's one problem I have, so it has to be brought to me. We've got it set up next to my chair, and, unfortunately, I hope to be able to walk someday, but I don't know if that'll ever occur… She [patient’s wife] gets everything ready, makes sure I do it, you know, and she cleans it up, and we get it ready for the next one

Health literacy

[Referring to knowing how to use the nebulizer] Well, no, in the end stages of my mother's life my sister and I were her caregivers. We pretty much had beaucoup experience with that kind of thing, and it was all known to me

[Referring to knowing how to use the nebulizer] Because my grandkids have asthma, and they have to get on machines