Table 5 The three categories with quotations describing the patients’ experiences and preferences concerning patient education

Guiding education

“It is probably mostly the consequences that you want to know more about and what to do to feel healthier”.

“What you can do by yourself, information concerning medicines and treatments, and tips on where to go. You also want to know if there is something you shouldn’t do”.

Reliable education

“Advice and information should come from people who work with it, people who know what they’re talking about.”

“To read about others in the same situation gives me important information.”

“It’s important that it is tailored to me.”

“I am actively looking for webpages that I know are reliable and robust”

“If you have your instructor there over the internet, who sees exactly what you do, of course you will feel more secure”.

“I don’t trust online information that I have searched for myself, and don’t know if the information is right or wrong ― or whether it is applicable to me.”

Available education

“I prefer to receive the education orally. Written education could also work, but it would be better to discuss and to talk.”

“I get information from my personal experiences, as I have come to know the symptoms”.

“If I had been able to use Skype and FaceTime, the professional could have provided comments if I, for example, did exercises in the correct or wrong way.”

“I think it’s good to be able to absorb the education when you have the time and want to have it. Then you are more receptive to the information given.”

“This thing with blogs is pretty good.”