Table 4.

Ways to support future families

Theme	Example
Enhancing communication with physician	• “So to have doctors that care and care enough to know how to talk to you so that you can hear, you can comprehend and you can be part of the conversation is so important.” (RR) • “For me, the discussion with the doctor was sufficient.” (RR) • “Also, to really let the parents know that they can quit at any time I think is important. My experience while talking to other parents is that they really felt like that once they were on board they couldn’t really quit.” (RR) • “I think it’s a clear communication about what the study is up front and especially concise. I think those are the biggest.” (NR)
More information on long-term risks/benefits	• “There is so much that is already unknown it is just adding more unknown but if you can give them all of the side effects of the known it would definitely aspire to do the unknown. I mean if you explain the motivation is to decrease the long-term impact that is a win.” (RS) • “More advice on the study alternatives, the study options and that the data exists. Obviously it’s not going to be as high a confidence as the standard of care, but if what somebody had said was 80 percent or 90 percent confidence we think this is the better cure rate with no compromise in cure rate and less toxicity, I would have said absolutely. If somebody had some numbers, if somebody had sort of the basis of the study had more data behind it, I think that would be what would have changed my mind.” (NR)
Other parents as a resource	• “It would have been helpful to have other families that have gone through a clinical trial to talk to.” (RR) • “Testimonials from other parents that have gone through it is something that is very helpful as a parent new to the situation.” (NR)
Easy to understand written, web or video materials	• “You know, a brochure, an infographic or a little video that has like, the four strands or four arms and like, your child can be X, Y, B, or C that I could have had my friends and family review.” (RS) • “A smaller booklet of information to look at. Just a more understandable version. It’s difficult to understand the huge packet even with some medical knowledge.” (RR) • “It would be great to walk away with something in your hand that describes it because a lot of the language that’s used and the references make sense during the conversation but are lost as soon as you walk away.” (RR) • “You could just get a website. I think that a website would be a huge thing for people to be able to link to and understand.” (RR) • “All the information possible in a format that we can understand is really huge when it comes to just your kids and making the best choice... something like a laymen’s terms packet would be good.” (NR) • “If there was like a YouTube video that’s supposed to explain what research studies are, the different types, what type this one is, and what it means to participate.” (NR)

RS=Randomized to standard chemotherapy regimen

RR=Randomized to reduced chemotherapy regimen

NR=Not randomized