Table 4.

Participants’ statements for each theme.

Major theme 1: Communication and teamwork Issues
1. Inadequate guidance regarding PM from the care team	P002 “Like why [my CPC] isn’t without pain and why can’t [the provider] raise her medicine?” P031 “If [providers] would say, ‘you can take too much of this and it can make you not feel well and you need to be a little careful as you increase it, but don’t worry about getting addicted’ I think it would have been a good thing because that’s what you see on TV and on news reports that the high number of people that are addicted to prescribed medication.” P068 “[my CPC is] afraid that [chemotherapy] is going to make her pain so much worse she won’t be able to stand it. I believe the doctor could have spent a little more time on explaining because she’s expecting answers from her doctor.”
2. Inadequate communication amongst care teams	P013 “the palliative care team should have sufficient time to talk to the oncology team…[when they don’t] then you have two different game plans. I think they probably need to communicate before the next team comes in and develops a different game plan.”
3. Inappropriate communication from the healthcare team	P010 “When we went in and seen [the provider] he just looked at [the patient] like he was a junkie, that he just wanted pain medication and, because it was 5:30 in the morning, he couldn’t hold nothing down.”
4. Ineffective pain management plan	P071 “[the providers] had [my CPC] on a pain patch and she was also taking two different pain medications in a day but the more she healed the less pain she had and with the patch on, and she was loony. She was not able to focus. Her blood pressure got pretty low […]. When taken off the pain patch, she was able to recover.”
Major theme 2: Caregiver-related Issues
1. Fear and beliefs	P031 “I think it was my fear more than [the patient’s] that he might get too much medication, he was going to get addicted and then finally he said “Well, I really don’t care, which is a good stand to take because why worry about addiction when you have less than a year to live? Why not be comfortable? So he took pain medicine more liberally, which was a good thing because he would finally get feeling pretty good and we were able to do things.”
2. Concurrent responsibilities	P027 “trapped, in prison. Actually, that week I needed a haircut really bad, there was [some] thing I needed from the store, and I didn’t have anybody or any way to get away.” P052 “when I’m working, he’s kind of responsible for taking his own medicine and he won’t take it. I called him and he didn’t take it. He said he fell back asleep and didn’t take it, so I got really frustrated with him that day and then the pain just catches up with him.”
3. Caregiver pharmacology knowledge and medication skills	P002:“ Sometimes I get on the internet and look things up just to see what their opinion is or what they would do, like on WebMD…mostly what other kind of medication [the patient] could be on.” P031: “I Googled a lot of things and, you know, healthcare providers sometimes hate Google because people find such silly things, but I did use that some.”
4. Organizational skills	P011: “She was trying to take too many, which we worked out a process to where, I gave them to her. You know, she had access to all of her medicine, she overdid it, and she overdid that like three different times, and then we did it to where I gave them to her one at a time each time.”
Major theme 3: Patient-related Issues
1. Fear and beliefs	P036 “[the patient’s] so terrified because she’s had friends in the past who are drug abusers, although she never has been, that she’s terrified of being tracked in the system as somebody who’s trying to get drugs that she will do anything to avoid that. So, she tried to take herself off of that medicine after her thoracotomy.”
2. Psychological and physiological well-being	P031: “The pain, he [my CPC] was experiencing, we had trouble getting that under control and then new, the cancer spreading and the emotional energy it took to, you know, to deal with those things”
3. Poor adherence to pain medications	P036: “A few weeks later terrible problems, sweating, pain, everything else so I drag her to the hospital, just beg her to the hospital. She couldn’t breathe, and what happened was she was trying to take herself off of her medicine too fast.” P052 “[my CPC]’s on this medication that takes care of [the pain] but he forgets to take it. I finally, last night I said ‘Have you taken this today,’ and he said ‘No.’ I said ‘you know, I guess every time I take my medication I guess I’m going to remind you to take yours.’ And so he’s been going pretty good today.”
4. Reluctance to report pain	P011 “I never got [my CPC] to be willing to report symptoms, and every time I’d force her to do it and, I mean, we have a, just almost a knock-down drag-out.”