Table 2 Representative quotes for identified categories

Burden of chronic lung disease

Dyspnea

“I just wish there was something that I could not have this problem with trying to walk and can’t breathe. Because I need to be able to get up and go play with my plants, dust my tables off myself. Little things that I would like to do and it’s just not able to do.” [Participant 17]

Medication adverse effects

“And honestly…I thought to myself I’d rather be dead than being on this drug. It was that bad. It wasn’t living.” [Participant 6]

Oxygen therapy management

“I’ve been in the house 99.9% of the time; I haven’t gone out. Because these other tanks are bulky, they’re hard to maneuver and they only last like an hour, not even.” [Participant 8]

Social isolation

“You’re eliminated from a lot of things. If you went to a concert and you had to get up and go to the bathroom, you wouldn’t be able to do it.” [Participant 17]

“I worry my not breathing right is affecting her.” [Participant 4]

Grief, sadness, anxiety

“Sometimes I just want to take a couple pills and go to sleep. You know what I mean? But I don’t because of my granddaughters. If it wasn’t for them, I probably would’ve by now.” [Participant 4]

“I can’t catch breath at all…It’s scary, believe me.” [Participant 5]

Challenges with care

“I’m so confused. I don’t know who to listen to now.” [Participant 16]

“The one doctor would say, well, I want to try this, this and this. And then another doctor will say, well, I also want to try this, this and this. But if it don’t work, or if it does work, then you either stay with it or if it don’t work, then the plans have got to change. That’s something that I believe – I actually think that it gets lost between the doctors.” [Participant 12]

“Not everyone is like my father at 86 years old… He has the drive to get better or at least stay stable and live his life to the fullest… I think they’re treated or passed over because they are older…” [Participant 14]

Understanding of palliative care

“Palliative care is nursing care to me…It’s all palliative care, as far as I’m concerned” (referring to nursing care in the hospital) [Participant 3]

“They would walk you around…checking oxygen” [Participant 15]

Perceived acceptability of palliative care and the TIPC intervention

Openness to palliative care

“It would be nice to be able to kind of know where my future kind of may go, doesn’t necessarily mean it’s going to go there. But it could be something to think about, that I might want to do something now to get ready for” [Participant 10]

“At this point I’m willing to try anything to help. Okay? This is how miserable I am.” [Participant 16]

“Sometimes I think going three months without seeing him [physician] is a long time because I’m not sure what my lungs are – like, the timing of my lungs. You know what I’m saying? As far as, like, how long do I have before they stop working. Those types of questions… I think if I had somebody in the middle that can help answer those and we can figure those out together, that my worries will kinda calm down.” [Participant 1]

Advantages to telehealth

“Going out…It can be a real chore. So I think having this on video, phone, I think it’s a lot better than having to do it in person….” [Participant 6]

“I would love to have video calls and things, especially with my daughter being involved with it.” [Participant 11]

Concerns about telehealth

“I just don’t feel comfortable about being videoed.” [Participant 7]

“It [in-person visit] seems more personal to me” [Participant 19]

Shared care planning

“You have to come together. We should be as one. All of us should be on the same page… You would want everybody to work together to be as one.” [Participant 16]

“It’s really smart. That’s the way it should be….They would…probably tell the doctor. This guy needs a little more uplifting…Let’s try to make him feel a little bit better because…negative isn’t working with him, but positive is. You know, I think that’s really important.” [Participant 8]