Sample Question Stem	Representative Responses	Direct Theme
Was the decision to join the research study difficult?	It was just something they asked if I’d be willing to do, and I said, “Sure, what the hell?” (P3) It was like, “Would you be interested?” [I said] “Yeah. Not a problem.” And he’s like, “Take your time to think about it,” [to which I replied] “don’t need to.” (P5) I did, of course, trust [my surgeon]. But I didn’t give it a great deal of thought. I just made the decision to participate. (P4) It was an easy decision for me. I was just like, yeah, that’s going to help someone else. Absolutely I’ll go for it. (P12)	Ease of decision to join
Can you tell us why you joined this study?	Hoping the research gets better, so for my next generation, they don’t get any disease like this. (P7) It might [help] down the road. You never know what kind of small detail can be connected...in my mind it’s like you never quite know what little, tiny thought is going to help something else down the road. (P5) Just a way to give back...I guess [to help] the doctor first, he’s the face of whatever it is... if it’s something that’d be helpful to him, he’s doing something so big to help me. (P3)	Motivation to help others
Do you think it’s important that scientists pursue research that aims to understand how the brain works? Probe: Why or why not? Do you consider it a benefit that you are able to participate by participating in this type of research?	Yeah, I think the brain is a very fascinating thing that we don’t know as much about and other things. (P12) [The brain is] the root... the base [of] the tree, and then the rest is the branches. (P12) If we have a better understanding of the brain, how it works and what it does, then that just moves us one step to providing perhaps new techniques or more success. (P2) Yeah, if I participate in the research study and then make the research gets better even the zero point one percent. I don’t know. (P7) For me I think that the benefit was just emotional or psychological that I was potentially helping someone else. (P2)	Valuing of basic brain research
How concerned were you with the risks of the study? Do you feel that the research study posed additional risk?	Maybe just taking on a little bit of extra risk might seem, if something had gone wrong, maybe you’d feel stupid for extending the risk, but it really didn’t seem like taking on that much risk. (P3) No, I don’t think so [it added risk]. I felt comfortable. (P10)	Minimal concerns with study risk