Initial consent |
Timing |
“I feel like it would have been a lot more helpful if I would have gotten… two, three more days just to get a little more used to… my medicine and how it worked. Cause I think it took me, like, a week to get… stable on the heavy chemo.” ID 10 |
“I think it was good…timing because I had a blood cancer…for some people it doesn't go away…as fast sometimes…but it was in that prime state when I was not at my worst but going through treatment but still not doing good…” ID 02 |
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Emotional impact |
“Well, it wasn't so much the trial that was a little overwhelming, so much as… the diagnosis because those were within minutes of each other.” ID 18 |
“So, while I was told that I had cancer for the first time, I wasn't exactly thrilled, but I wasn't completely panicked either. I knew where I was, and I knew that the hospital was going to do its best to try to take care of me.” ID 18 |
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Patient autonomy |
“They actually go to my dad first cause they didn't really know my age or anything. Most of the people assumed that I was under age, maybe like 17.” ID 10 |
“I assessed it with those who brought the trial to me, certain doctors, and staff. I didn't really discuss it outside of that just simply for me because I was quick to make up my mind.” ID 15 |
Informing participation |
Decision-making |
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“I just chose to participate in the ones that didn't seem like too much because…I don't want to be in, like, five and then be stuck at the hospital all day long. But it was pretty easy for me to say yes to the couple I did. Those were the first ones that approached me…I'm always down to help somebody else in my situation in the future.” ID 02 |
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Comprehension |
“Yeah, I just can't remember anything because it's so much information and so little time.” ID 14 |
“They gave us the pamphlets or the papers that described everything, they went over everything about what the study was about, how they were gonna do the study, what it's for, why they're doing it. And then they asked if I would like to participate, and then I said yes.” ID 20 |
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External influence |
“My parents…don't really know anything about it and they're kind of more closed off as far as medicine…as soon as they ask me about the study, they told me. They told me I couldn't do it.” ID 10 |
“Oh, well, I can't really make decisions by myself, so I guess it's easier when they, uh, push you towards one side.” ID 19 |
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Specific knowledge |
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“As far as I was made aware… the doctor had told me that the trial chemical… is suspected to be less harmful to patients but at the same time, they were also attempting to measure whether or not it was as effective as the standard treatment.” ID 18 |
Participant relationships |
Communication |
“I think it was a little confusing, especially for me. I was kind of, like, in and out of cons-, consciousness and my dad kind of just hearing that, oh okay, clinical trials, or studies, and then this is your treatment. I think he kind of was a little concerned about it as to, like, maybe he thought that what the medicine I was getting was probably going to be tested, or something like that, as far as I don't know how he thinks.” ID 10 |
“I was asked to participate by one of the doctors who was in charge of my care, and I think that this is pretty effective because he's already looking over me and other reasons, so I think it was handled well.” ID 20 |
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Relationships with providers and care team |
“That's questionable, actually, because I've never really been, you know, in a hospital room with me being the patient and all. But, I've seen like more worried faces…but I feel safe here because they say it's the best hospital or whatever.” ID 04 |
“Everybody's been pretty good though. Yeah, like explaining and being…nice and they know how to explain everything, questions” ID 14 |
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Expectations of care team |
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“…In regards to doctors, I think they feel an obligation towards attempting to improve the medical field… And I think that's why…they are very hoping that patients…would sign onto that, but at the same time, they understand…when a patient would say no.” ID 18 |
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Relationships with parents, family, and friends |
“Yeah, that's the thing that… my dad handled… because he couldn't read English and speak English very well, and my mom wasn't there. So I think that's more of the reason why… I think he did ask a couple questions but he was still kind of uncomfortable with the idea.” ID 10 |
“…They talked to my parents in a different room than me, mainly because I'm, you know, I've only been here for a week and my first day being here they had to, like, pull my parents aside and then come back inside and tell me.” ID 04 |
Patient determinants |
Motives |
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“I decided to participate cause I think it would help the researchers and also the people find a cure, or try to find a cure” ID 12 |
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Attitudes |
“I've actually had, you know, a little bit of doubt about them…a lot of things go across your mind… and I get sort of a weird vibe out of it.” ID 04 |
“I generally don't see them as anything but good…they're not really invasive. They contribute to more of an understanding of what you're fighting. So, I don't really see any downsides to them.” ID 15 |
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Cancer experience |
“Well, I just felt, um, sad.” ID 12 |
“[At] the age of 16 and someone tells you, oh guess what, you might die if you don't do this, it just pushes you forward and makes you not want to give up, you know.” ID 04 |
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Outcomes |
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“They tell me everything's just going to be okay. This thing…is actually helping you. And I know that it, and I know it's helping because the minute I got in this place I looked dead inside. My skin was, um, I don't remember, pale a little. And now, like, I've got some of my color back. I feel more energetic. ID 04 |