Representative quotes for barriers to and facilitators of oxygen therapy mapped to the Theoretical Domains Framework

TDF domainRepresentative quotes
Beliefs about consequencesYou're not free, can't laugh or cry fully because if you do you won't be able to breathe even with oxygen – that is terrible and upsetting. Also, being tied to oxygen makes you feel like you're stuck inside the cage.
(Participant with IPF, oxygen therapy use unknown, UK) [23]
I thought once I get oxygen I'll be back to being who I was, but that didn't happen but it makes life easier.” (Participant with ILD on oxygen therapy) [24]
O2 does denote a progression…in my disease that I wouldn't be happy about and…feels like maybe it would be a setback
(Female participant with chronic hypersensitivity pneumonitis on oxygen therapy) [28]
Once I start doing that [using oxygen], I reckon that's the end of the line
(Participant with ILD not on oxygen therapy) [22]
Environmental context and resourcesI mean, you, you have to adapt to, to planning to take the charger and the machine and the cannula and, you know, the cleaning supplies that go with, you know, that, all that stuff
(Male participant with IPF on oxygen therapy) [28]
I've got the oxygen. I used to be on it when I first got it, I used to hire it. I was on it in hospital, two units I think it was and then came home and I hired one. I was on that 24 h a day and then I thought this is too expensive. The specialist said I'll be on it forever so I thought oh well I'll just buy one, so $4700 later.”
(Participant with IPF on oxygen therapy) [25]
Everything was an expedition if we were going out
Before leaving, they had to “figure out what your [O2] needs are going to be while you're gone
(Caregiver of person with IPF on oxygen therapy) [25]
Emotion/optimismIt's maintaining her and, uh, for that I'm grateful. And I saw a lot of confidence when I gave her the portable oxygen machine initially. She was super-excited about it; you could tell that she felt good. She felt confident.
(Caregiver of person with PF on oxygen therapy) [22]
Well, [I think about] the harm [of running out of oxygen]. Basically, going to collapse. And, need to get an ambulance, get some oxygen, that's going to take some time.”
(Participant with ILD on oxygen therapy) [25]
We've been to Tesco's and I've run out (oxygen)…..I was really gagging for breath. That's when the panic attack starts setting in and you know they're terrible. I mean I have to carry Valium all the time now.”
(Participant with ILD on oxygen therapy) [23]
Social or professional role and identityJust the stigma of it. I don't know…I know a lot of people assume that they put themselves in that position, by smoking or COPD and I don't want people to think that of me, because that's not why I have it.” (Female participant with IPF not yet on oxygen therapy) [28]
…you ride a fine line between how firm do you get, you know, and how soft do you stay, to get accomplished what you feel is important.” PLOs would sometimes heed their IC's advice and other times “totally ignore it” (Caregiver of person with PF on oxygen therapy) [28]
I just felt embarrassed for having these tubes running up my nose and from a tank on my back. If it was a pill, nobody notices it, but with a cylinder on your back and a plastic tube up your nose it is much more visible.” (Male participant with fibrotic ILD on oxygen therapy, 69 years old) [29]
Beliefs about capabilitiesWell, it certainly has expanded my ability to do the things I want to do. [I am] more comfortable pushing what might be the limits of my breathing ability and knowing that there is some relief available other than just trying to huff your way through it.” (Male participant with IPF, 67 years old, on oxygen therapy for 9–12 months) [28] “Freedom. Being able to do things I haven't been able to do for such a long time. It made me feel less tired. It made me feel less breathless. My cough wasn't so bad. I could do things without having to stop. It taught me how much this disease has stopped me from doing things. It's not because I don't want to do them—I'd love to do them—it's the fact that I physically, because of the breathlessness, can't do it” (Female participant with fibrotic ILD, 52 years old) [29]

TDF: Theoretical Domains Framework; IPF: idiopathic pulmonary fibrosis; PF: pulmonary fibrosis; ILD: interstitial lung disease; COPD: chronic obstructive pulmonary disease; PLO: patient loved one; IC: informal caregiver.