Table 3.

Making the decision about randomization

Theme	Examples
Information overload and timing	• “It’s a shocking volume of information that you’re trying to take in and then make a decision about a clinical trial and determine what is best for your child. I don’t know, you know... It’s hard. It’s hard.” (RS) • “It’s such a hard time to make any decisions at all...I remember at the time telling my husband that it was hard for me to like, pick out what clothes to wear because I was so overwhelmed...with your child’s illness and all the decisions that you’re being asked to make and all of the different possible outcomes. So I think just any decision is really challenging.” (RS) • “The unfortunate confines of the timing and the kind of hysterical state of mind of the parents at the time and the fact that it’s asking you to sign up for something like that...it’s hard from the parent’s point of view in a time crunch to decide to do something.” (RR) • “Yeah, I think it would have been, if I had to decide like that first day, I don’t know if I would have done it because it’s like complete overwhelm.” (RR)
The unknown of deviating from standard of care	• “She was first diagnosed and we were told that the survival rate was like 90 percent and that felt really positive and secure. And then the idea that we were going to not necessarily go the established course made me just wonder if we were going to do the wrong thing.” (RS) • “We were grappling with it so much and that the sort of gut reaction of like I can’t allow my kid to be given less of the drug...so in the end like to truly have her be a guinea pig, to have an experiment done on her was something I couldn’t do.” (NR) • “There were just too many variables. I guess there was too many unknowns...I just feel like one more thing that we didn’t have control of when we were like kind of grasping at straws already.” (NR) • “Yeah, there was a proven track that showed this does work, so we wanted to see a proven track record of this does work... we think maybe we could do better with this therapy but we didn’t know. We didn’t want to take that chance, we wanted to stay on the proven track record of we know this works.” (NR)
Fear of less therapy and subsequent relapse	• “And then also just in a society where more medication means more healthy. That’s also a difficult part of choosing something that has less just because of the mindset that you enter into the experience with.” (RR) • “I felt like if she was on the lowest one and she relapsed, I would’ve felt guilty. So, that’s the only reason. That possibility was really stressful for me.” (NR) • “If we had a guarantee she would get the same amount of chemo or more, we probably would have stayed on it. But the question was if she got the less option, that was not what we wanted to... So, selfishly or not, I couldn’t handle my kid not doing all those treatments.” (NR) • “I think the primary goal for parents is they don’t want the cancer to come back. So, anything that increases that chance is scary. When you know the current treatment is probably successful as it was. You know, you don’t want to – you know, that’s a hopeful number. So, to do something to mess with that is like scary. You know, for me, I was just thinking of I want to make sure the cancer is gone, and gone for good. But then, I think afterwards, taking into account for the rest of her life, as well, she’s going to have the effects of all the chemo that she’s had.” (NR) • “So, we decided not to join the study at all, because we wanted to make sure our son got at least the same standard or more medicine.” (NR)
Hope for less therapy	• “Because if she got less medication then maybe she would suffer less.” (RS) • “Just knowing that if we did do the study, there was a chance of him doing less chemo anyway, which was always kind of a nice thought.” (RR) • “A less toxic option was very appealing…we had an opportunity to make the treatment less toxic and less harmful.” (NR)
Altruism	• “The thing that stuck out to me, I think, mostly was that if they did not do these studies and if people did not participate, then they wouldn’t be able to fine-tune the medication and the treatment.” (RS) • “I didn’t feel like I fully understood what I was getting into completely, but I felt that it was still the right thing to do.” (RS) • “Another reason was to help benefit the kids who came before him who were going through the same thing as him. Hopefully, things would come out well so he would not have to receive as much chemo and have that be the new norm.” (RR) • “Just for the research purposes for her future kids...advancements in cancer treatment for children.” (NR) • “We were very concerned about science. Like we definitely have this feeling of like I’m not going to take all of this research that was done that is benefitting my kid and then close the door behind us.” (NR)
Trust in their physician	• “The doctor offered and we decided to, because they explained how important it was for the treatment, for the trial, how important it was because the kids were able to be treated better and have better options for the treatment. The doctor explained and we decided.” (RS) • “Well, first of all we trusted our doctor and his decision.... that was the main thing.” (RR) • “There’s no reason why we couldn’t participate. The risk was calculated and our doctor felt comfortable with putting any of her patients into it.” (RR)

RS=Randomized to standard chemotherapy regimen

RR=Randomized to reduced chemotherapy regimen

NR=Not randomized