Table 2.
Themes and corresponding exemplar quotes.
| Quote # | Themes and quotes | Participant # | Type of exacerbation |
|---|---|---|---|
| Theme 1: Access and attitudinal barriers contribute to reluctance to seek care | |||
| Attitudinal barriers to care | |||
| Q1 | I don’t like asking anybody for anything…they’d take me I know, but I just hate asking them. I don’t involve anybody in it. There’s family here, but I don’t involve them. It’s my problem. | Pt 37 | ED |
| Q2 | I don’t want to trouble the paramedics…or the hospital…every time I have these things, there’s a feeling of guilt…putting people through this …going to the doctor, going to the hospital, having to call 911, putting my wife through it. | Pt 45 | Untreated |
| Practical barriers to accessing in-person care | |||
| Q3 | It’s just a hassle - driving through traffic, the time it takes, paying for gas, missing work… I don’t go unless I absolutely have to. | Pt 7 | ED |
| Q4 | Yeah, just the inconvenience of going there…it’s not that I can’t go, there’s no one thing stopping me… I just don’t want to do it…it’s such a bother. | Pt 11 | ED |
| Heightened reluctance to seek care in ED settings, but few other options | |||
| Q5 | The ER, that’s the place to go only if you are in real dire straits, you don’t go there if your breathing is just bad, only if you absolutely can’t get a breath…so you put it off if you can. | Pt 55 | ED |
| Q6 | I don’t like going to the doctor but I hate going to the ER…I try to keep out of there as long as I possibly can. | Pt 46 | Untreated |
| Q7 | First I called them up [Primary Care office] but they said it would be a couple weeks before I could see anyone…couldn’t wait that long with my breathing. | Pt 2 | ED |
| Q8 | Sure, if I could call up and see someone [in primary care], I would do that but that’s not how it works…you can’t get in to see someone when you need it. They just say to go to the ED. … I don’t even call them anymore. | Pt 20 | Hospital |
| Theme 2: Waiting is a typical response to new exacerbations | |||
| Q9 | I’ve been dealing with this so long…I always know when it’s getting started and something is coming on….always starts the same way…get tight in the chest, hard to take a deep breath. | Pt 49 | Untreated |
| “Trying everything first” | |||
| Q10 | I can tell when something is coming on so I do everything…my inhalers, my oxygen, my medications and I try and slow down and rest. Everything I can do myself first [before seeking care]. | Pt 38 | Outpatient treatment |
| Q11 | So I know what to do…I take my two inhalers, and if it still continues then I go up to the store and pick up some Claritin-D, some Sudafed, some Musinex…then after a while my breathing will open up and after a few days of those I’m a lot better. [LATER] Oh I’ve just figured out what works through trial and error…I’ve been dealing this this [COPD] long enough that I’ve just figured out what works for me. | Pt 42 | Untreated |
| Q12 | I have some medications my doctor gave me to use here when I need them [steroids and antibiotics]. I started on those after my breathing got bad and gunky…and I did all my other usual stuff like my inhalers. Then you wait and see what happens… You gotta give that stuff time to try and work it out. | Pt 23 | Hospital |
| Q13 | My doctor has given me things I can take if I need them [antibiotics] but I don’t like resorting to using them …don’t think it’s good to use them too much…don’t like how they make me feel and I don’t think it’s good for you. | Pt 33 | Outpatient treatment |
| “Waiting it Out” | |||
| Q14 | I just do all my usual stuff and wait for it to pass… sometimes it gets better and sometimes it don’t. | Pt 3 | ED |
| Q15 | Because you always seem to hope that it’s just a cough or cold, and then it just keeps getting bad and then you have to go to the doctor. You want to think it will get better, but usually it doesn’t. | Pt 59 | Outpatient treatment |
| Waiting but not waiting too long | |||
| Q16 | What happens is if I wait too long, if I fight it and try to do it with my own medications…then I have to go to the hospital…then I think I’ve waited too long. When I had to call the ambulance, I should’ve gone earlier. | Pt 14 | Hospital |
| Q17 | In my case, a lot of times I’d wait a week or two weeks before I’d go in. A lot of time I’d wait to the point where it’ll take forever to fix. If I hadn’t waited, if I’d gotten there sooner, it would’ve been fixed sooner and it wouldn’t have gotten so bad. | Pt 18 | Hospital |
| Theme 3: Transitioning from waiting to care-seeking: The tipping point | |||
| Q18 | This time it didn’t get so bad. At about day seven, just when I was thinking I might need to head to the ED, I started breathing a little better. … Wasn’t nothing I did, just got lucky this time I guess. | Pt 53 | Untreated |
| Q19 | I always wait a week, that’s the time I give it each time my breathing gets bad. Then if it’s not better at a week I call the doctor. | Pt 40 | Untreated |
| Q20 | If what I’m doing just is not working and I’m using my inhalers here like crazy…and if it’s not working and I have nothing left to try, then I better get going. | Pt 1 | ED |
| Q21 | Yeah, when I couldn’t catch my breath even when I laid still…when I couldn’t even walk across the room or get to the bathroom, I decided this is something I couldn’t handle by myself. So I went to the ER. | Pt 10 | ED |
| Q22 | I can usually tell by what I’m coughing up, like a rainbow. And if it gets to be a certain color, I call my doctors. | Pt 28 | Outpatient treatment |
| Q23 | I turned my machine all the way up and still couldn’t breathe…my rescue inhaler didn’t work. I was gasping for air and got all panicky which made it worse, so I ended up taking an ambulance to the hospital. | Pt 19 | Hospital |
| Q24 | I always give it about a week to get better on its own. But then I got tired of not being able to breathe and thought I’d better do something about this. | Pt 38 | Outpatient treatment |
| Q25 | Well honestly, I only called the doctor because she [wife] was on my case so bad to get seen. So I called and ended up going in to Urgent Care that night. | Pt 12 | ED |
| Q26 | My wife was really fed up with my bad breathing…I didn’t want to go to the ER but she said ‘that’s enough of that’ and called 911. | Pt 4 | ED |
| Theme 4: Learning from and avoiding worse outcomes | |||
| Q27 | Well I’ve played that waiting game before and ended up in the hospital….this time I saw it coming on and went on in to get checked out. | Pt 9 | ED |
| Q28 | I didn’t hesitate [to seek care] this time. I don’t mess around with my symptoms and hope they will go away like I used to. Now I want to nip it in the bud, go in there earlier and take care of things so I don’t end up so sick…don’t need another case of pneumonia. | Pt 34 | Outpatient treatment |
| Clinician role in encouraging care seeking | |||
| Q29 | My doctor [pulmonologist] got on me about it…told me not to wait so long. Don’t try to get in and see her, just go into the ER if I’m having any problems. | Pt 39 | Outpatient treatment |
| Q30 | [PCP] told me I was doing damage to myself by not getting in there sooner and I might be hurting my lungs or doing other bad stuff to my body. He said as soon as my breathing gets bad I’d better get myself to the ER…now I try and make myself get in there sooner. | Pt 2 | ED |
| Q31 | I always call to see if I can get into my PCP and I’ll wait to see her if I can… sometimes can’t get in and then I end up waiting, you know, and then end up at the ER anyway…if only I could get in to see her then I wouldn’t do all that waiting and wouldn’t have to go there [ER]…that’s what I want to happen. | Pt 54 | ED |