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. Author manuscript; available in PMC: 2015 Dec 10.
Published in final edited form as: Arch Pediatr Adolesc Med. 2011 Jun;165(6):533–539. doi: 10.1001/archpediatrics.2011.87

Table 1.

General Research Concepts

Theme Subtheme Representative Quote
Topics teens most interested in knowing before agreeing to participate Adverse effects “Like if it would affect like anything important. Like, I don’t know, my heart, my lungs, my ovaries.”
“I would want to know the possibilities of any side effects, so I wouldn’t hurt myself.”
Extent of previous research on vaccine “Do they know anything about it? Like did they just make it and not check what’s in it because if you give it to somebody, do you know what could happen? Because like if I’m going to get it, I still want to be safe after I got the injection.”
“How many people or am I the first person to be tested on this?”
Procedures “Like what are they going to do to me? What are they going to do?”
“The process of it.”
Altruistic view toward study participation “Umm. I think just if it does work, just being a part of something that can change the world. That’d probably make me like feel like I was a part of that. So that would probably be my reward.”
“If it works, I feel like I was part of the reason why it worked. I risked my body and stuff.”
Placebo Vague understanding “Like a sugar pill. They’ll give it to you but it really won’t do anything.”
“Prototype.”
“Less expensive, less effective.”
Good understanding “It doesn’t do anything to you. It’s kind of like there’s 2 groups. It’s just an experiment. It’s like the control group and the variable group, so the control group nothing changes, and the variable is the group of people who’s getting the shot. And they’re the ones who will actually get the actual vaccine, and the researchers are going to be testing the results on them compared to the control group, which nothing is going to happen to them.”
Why use it? “That’s kind of weird. It’s kind of different. It’s like you’ve got a 50/50 chance, you know, a person’s struggling, trying to get better from AIDS, gets a dud. Like they’re giving you the bird, you know? It’s like hey, look what we did to you.”
Randomization General “Probably at random. Throw a bunch of names. I don’t mean exactly, but using an example of throw a bunch of names in a hat, and pretty much that way of like split it half and half, and these 6 are going to get this and those 6 are going to get that, or whatever the number is.”
Investigator decides “The person who’s giving it (the injection) to me decides.”
“Well, it might depend on the doctor.”
“But let’s say a researcher says oh, I want this person to have the vaccine, they could recommend it or whatever, whatever, and see if they could get it.”