TABLE 2.
Topics and sample quotes.
| Topic | Sample quotes |
|---|---|
| Psychological pain self-management strategies | |
| Cognitive restructuring | “Sometimes you can't stop those negative thoughts, but you can go, ‘Okay, you've had your five minutes of fame, it's time to try and think about something happier.’” Female, 37, pancreatic cancer “…I was really worked up about this oral pain thing… I just had to get out of my head. Be like, you don't even—it's never been that [cancer progression]. Why would it be that today, let it go.” Female, 49, thyroid cancer |
| Distraction | "Distraction is something that I use a lot when I'm in a lot of pain is putting on TV or focus on somebody else's problems or on that kind of stuff." Female, 50, breast cancer |
| Pain acceptance | “Well you don't want the pain to take control. Being able to mentally deal with it on a day to day, especially when I know the pain isn't going to go away…” Male, 52, renal cell cancer |
| Social support | “…[some friends] came over for dinner… and I was exhausted when they left last night, and ready to go die in bed as soon as they walked out the door, but, it was nice to have the company, and to get to see people that care about me.” Female, 37, pancreatic cancer |
| Integrating medical and psychological treatments | |
| Opioids alone are not enough | "…all I've basically been given… is pretty much just the pain medications… I believe, then [when stressed] you're—it's just compounding your pain that you're having or your misery that you're having… So, it's more than just taking your medications." Male, 62, lymphoma |
| Awareness that mental wellbeing impacts pain | “I think if you're not rested, it impacts—you're more susceptible to pain level being higher.” Male, 71, prostate cancer "And I think a patient would appreciate it because emotions are very well tied to pain care and taking pain meds, and they affect your body." Female, 37, desmoid fibromatosis |
| Importance of psychological coping | “The mental aspect of that stuff, and I'm sure you guys know this, but you can get pretty low. You can get kinda in your head with cancer. So, I would think pain management is a big thing, but also the mental health aspect would, be something that I would definitely use– ‘Cause I, I wish—I've been there. [sniffles] it can be terrible.” Male, 53, head and neck cancer "So you're feeling crummy is adding on to your actual physical pain, the real pain you have, never mind your mental and mental pain increases your real—your physical pain from your nerves that you're having." Male, 62, lymphoma |
| Opioid hesitancy | |
| Addiction-related stigma and fear | “It took me forever to find a doctor that was willing to write that prescription… and he could just tell that I really needed it. It's just nice not to have them threaten all the time. You know, like, ‘Well, we might have to—we might have to cut you back,’ and, ‘We might have to do this.’ And I just go, and I know they're gonna treat me like a human that needs help, that's in pain. That I'm not trying to get a fix, or crush it down in a spoon, or nothing like that.” Female, 46, desmoid fibromatosis “I didn't really aggressively try to manage that pain. Because, at points, I get really scared of becoming addicted to pain medication. Which seems really silly for a terminal cancer patient. But it's just like, I'm not to the point where I'm, like, actively dying yet. So, I don't want to be like, hindered by addiction.” Female, 27, ovarian cancer |
| Side effects | “If I have to take—everything that I'm on makes me drowsy. So, sometimes I have to pick and choose what I'm gonna alleviate” Female, 38, neuroendocrine cancer |
| mHealth preferences | |
| Relevant | "I mean and most people, almost everybody can relate to what they're saying, pain affects your mood, your negative thinking, negative thinking affects your pain." Male, 62, cervical cancer “I feel like there might be some older people that are a little turned off by the animation [app content], but, for me, it—like I said, it's kinda just simple and relatable. Information that is definitely pertaining to my particular experience.” Female, 37, pancreatic cancer |
| Convenient tools and resources | “I think it'd be helpful to have it there on the phone so you can track it [pain and symptoms] …” Male, 71, prostate cancer “If I get off schedule, it throws me into a couple days of, you know, ‘oh my goodness’ kinda thing. And having all of the—the reminders, and the tools, and to cope would be nice.” Female, 37, pancreatic cancer "But this [video] is very informative also to help because I think pain and stress are very—with cancer, they're not helpful. So, it's something that we need the education on… I don't know all of my medicines and I'm just trusting my doctor. But if I have a better knowledge, or better management, it would help me." Female, 37, colorectal cancer |