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Table 5 Positive and constructive feedback obtained from screening the decision aid

From: Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions

Reactions

Video

Handbook

Positive feedback

Constructive feedback

Positive feedback

Constructive feedback

Overall Impression

“… if it was something like that available…when I started dialysis it would have really been welcome because information was scattered…And this, I like the way it’s organized, the way it’s broken down… I think it’s touched just about on everything that your initial concerns would be.”

“What I did have an issue with was the sequence of, I liked the way everything was broken down but I think it should have been sequenced differently starting with dialysis at the center, because they said that was what’s most frequently done, most frequently used.”

“I really do love this book. It does give a whole lot of information for someone who’s just starting out. You know, they really need all of the information they can-that they can get. And I love the fact that they would have a DVD to go along with it.”

“A lot of times if a person is just starting dialysis, you know, you got the sluggishness in your brain, your memory, and your attention. And it might be a little hard to focus on this as opposed to seeing a film, hearing people’s testimonies, you know, I think that would settle a little better than, you know, trying to absorb all of this.”

Length

“But I didn’t mind the length of it because it gave, you know, information that you need to know.”

“I thought it was too long. But as it went on we could see how important it was for it to be that long and I think if I was in that situation, it might not have been that long but since it wasn’t my issue, too long.”

“When I first saw it, it felt overwhelming but it was broken down so well that I can just go to the parts that I think are relevant to myself or that I want to see that day… it's separated so well that I can just go and look at it.”

“I mean, the inside of it, the content is good. I like the graphics in it and the charts…but I guess if it was some kind of way you could kind of condense it because they’re probably already getting a whole lot of other information at the same time to have to carry a big book.”

Amount of Information

“I think it's very informative and has just the right amount of information.”

Constructive feedback not available

“I think this is a terrific reinforcing publication plus when you’re watching a film you can only remember so much whereas you’re going to go back here and you’re going to see all of it in the different forms… Reading and writing solidify your thinking…I like it.”

“It could be very daunting just even looking at it. But if you have a video hopefully it will pique your interest enough to be able to go to the individual area that you’re concerned with and get that information that you need.”

Easy to Understand

“I did learn a lot of information from watching the movie. Even having some relatives that had kidney issues, this still provided more information.”

Constructive feedback not available

“It’s doesn’t go to a junior high school level so that means that everybody can understand it. So yeah I think it's clear.”

“The spoken word, a lot of times, is much easier. I think the combination is a great vehicle, I do. But I think with this, you know, that’s one of the things that I’d be concerned about. ‘Cause someone with a fifth grade reading level wouldn’t really be able to understand everything.”

Balanced Presentation of Treatment Options

“I don’t think they leaned anywhere. In fact, they kept saying basically it was your options to select or decide which way you want to go and you even had an option to rescind that and go in another direction.”

Constructive feedback not available

“Yeah it's pretty well balanced because it has the section for each treatment, you know, each mode in there so it's balanced.”

Constructive feedback not available

Areas of Improvement

Not applicable

“I think the one improvement that I would suggest is that [they put] a little bit more emphasis in each type of treatment about the emotional impact on not just you but also your family and your support system.”

Not applicable

“I think the best part and most useful part for most of the population is the all the facts part. It’s nice how they’ve compared the transplant, which is the ideal, to the other treatments. It might be helpful if there were a foldout where all the treatments were laid out like this to just read across.”