Table 6 Summary of user comments by theme

Aesthetics: the theme, layout and visual appeal of the website

“I like how [the pictures] have the sort of comic bubbles to them…that part really stands out for me (age 16).”

“Like the video was like of dark like a guy walking at night and really like really very dark like just the image is not what they’re saying…like it set not the right tone for the video cause it’s about adaptation (age 17).”

Content and features: the appeal of written text, animations, images and videos on the website

“It’s the first time I have seen videos on a hemophilia website (age 17).”

“I thought it was pretty cool because they they had patients interviewed so you could kind of relate better to that (age 14).”

“The animations are great, like the one about pain. You can really see what is going on (age 16).”

“[The timeline] looks very black right now…If you got a bigger timeline um that took up more space on the page um we could add maybe a bit more color cause I mean it’s just black and black’s a plain color too right (age 17).”

Understandability: users’ level of comfort with the language, concepts and readability of the website

“Until you told me I actually didn’t know cause I was looking at the timeline and the mouse see it move from left to right or whatever (age 17).”

“…kids younger might understand a lot better you know seeing the roads, how it relates to the blood vessels (age 17).”

“It is a little too much text, but it is ok…I would read it because I want to know (age 16).”

Comprehensiveness: the breadth and completeness of the information offered on the website

“I think it really has everything (age 16).”

“[It] gets into like lots of detail so if there is like any questions on your mind then there’s probably a subtitle for it that you can go and research on it or read about it (age 17).”

Quality and credibility: participants’ perceptions of the accuracy and trustworthiness of the website content [12]

“Most of the stuff that’s on the other websites…I call it like a bird’s eye view, like some else’s point of view looking in, but this [website] is like the teens, the parents, the doctors, everyone getting their [in]corporations…they’re like all voicing their opinion and stuff like that and you can see different point of views so it’s helpful (age 17).”

“Somebody I know did this and I trust it more than just some other site that I just click on off Google or something. I know that actually actual people made this (age 16).”

“[I like] how these [names] aren’t in bold cause on most sites the names of the people on it are like bold. These are just sort of there so that if they are like looking for it, you can find it but not really like standing out (age 16).”

Sociability: the ability of the program to facilitate user interaction with peers and health care providers [12]

“That [forum] would improve it…like a lot (age 13).”

“[You can] connect with other hemophiliacs (age 13)”

“If you want to ask a question but you can’t ask everybody…[then] you don’t have to tell who you are and where you live (age 16).”

Intent for future use:

“It gives me a lot more knowledge than I knew before… I probably would go home and go on the site, even after the study is done…because there’s some headings and some subtitles like that I haven’t seen before or like I’d like to know more in depth about (age 17).”

“[Teachers] can come here and easily read it or look at it in detail (age 17).”

Overall impression:

“I thought it was very very well done – it was appealing the pictures and the videos and… always kept me intrigued…I like how it just put the information out there and you could just, you know, read and learn more about it (age 13).”

“Most sites aren’t really like this…it would be a lot easier to understand if I had a website like this to look at (age 16).”

“When I was young I would come to the hospital all the time and whatever and the nurses would be talking and then sometimes you know when people are speaking and you just nod your head and you’re just like yeah yeah yeah yes and then you don’t really understand?… it’s helpful because I guess next time or the times when you’re reading it you hear the word and it clicks in your head [you think] oh yeah back to [the website] (age 17).”