Table 7.
Focus Group Responses: Educational Preferences for Clinical Trials (Theme III)
| One-to-One with Health Care Professional |
| 1. “Give us a brief synopsis of what’s happening or whatever, and then if it’s something we’re interested in when we go to our doctor we’ll take it to our doctors and get it validated that that point, you know anything about this. Oh, Ok, you think it’s good” |
| 2. “We had basically the same thing. To educate we said advanced notice, send the pamphlets out prior to going to the doctor and getting the information so you could have the information. One on one discussion. And as far as who should give the information, the doctors and the nurses and maybe if there could be some parents available who have gone through this or had the clinical, because sometimes I might be more prone to listen to another parent than to listen to a doctor..” |
| 3. “Basically, yeah, mail and then I’ll talk to my doctor after I’ve done my research, see what he’s talking about compared to my research. Then I’ll make my decision.” |
| Educational Information in Different Formats |
| 4. “DVD. Like you can watch it instead of reading it.” |
| 5. “I’d like to see a video or something. Just hey, this is what’s going on. Then they could present it to us in several different ways or what they’re doing in the labs, different things like that.” |
| 6. “Um-hmm, when I get the literature I’d say we got something new for your disorder or whatever. I’ll read it and I’ll let her read it and I’ll ask her what she thinks about it. Is she excited, or I don’t want them poking me or sticking me or whatever, then I would still talk to the doctor about it and I’d give her the pros and cons. We’ll discuss it together.” |
| 7. “Just given out pamphlets that are visible so we can see the information.” |
| 8. “You could have an information booth, whether it’s a permanent fixture within the clinic that just gives all information, whether it’s social events or whatever. An information booth, a go-to reference, place within the clinic that’s available.” |
| 9. “Well, I say after because there’s a tendency that you might forget after the doctor has spoken to you about it. So I figure if you get it through the mail, that’s a follow up from the doctor’s.” |
| 10.”I prefer to get it in the mail because I can read over it and then I can investigate it myself, and then I can be a little abreast when I bring it to my doctor, and he can tell me what he knows about it but I still have a little history on it. If I get it from him, like he said, you’re only in there about 15, 20 minutes so all you’re getting is a brief overview and you really aren’t sure. So I can go on the Internet, see what I can find, talk to other people.” |
| 11.”For outside the doctor speaking just making sure that he gives me literature, maybe that also has links to where I can go and research stuff that’s related to the clinical study as well.” |