Table 3 Feedback from Providers and Parents (Cycle 1)

Comprehensibility

None

3

“Yeah, I think it’s a good general format because I think over time, what we all do and depending on the busyness of the day, it’s a great tool to bring all the surgeons back to the same key points for perspective.”

“So when you kind of have something laid out like this, I think that would be helpful for families to just make them aware if they can give this a little bit more time or not, and to really see on paper, sometimes it’s really helpful too…”

“Considers other factors” many families get tunnel vision in an appointment and then post op are wishing they had considered other factors.”

Minor

3

“I think the doctor is not really keeping an eye on the symptoms. You will keep an eye on the symptoms and revisit the doctor as necessary or possibly revisit the doctor if things are the same or worsening.”

Concern with the language used in the risks general anesthetic section will be of concern to families especially when they take it home. “…when I do the teaching, from a child’s perspective, it is really scary…”

Provider added in pain management to the values section. “there are a certain number of kids that won’t take pain medicine, so that’s a worry for parents sometimes.”

Acceptability

None

6

Using the tool to help parents feel more involved “I think it will, for those who want to be involved.”

“…I think that it can only serve to benefit the relationships between us, the client or the parent and the medical doctor if they’re able to understand the stress that the parents are going through…”

“… it may be the 5^th or 10^th surgery for that Dr. in that week, hypothetically, but it’s the biggest decision that I would ever make because the boys are everything…”

“My biggest like is that it makes parents recognize that not everyone needs surgery… the easiest thing to do is something, sometimes the hardest thing to do is nothing.”

Feasibility

None

6

“And I would feel confident feeling that I was getting something from the hospital… that I could just kind of read with confidence knowing…”

“… I’d like to be able to share it with my mom and my family, just my support system in trying to help lead me through to get to where we needed to get to with regards to putting our children through a surgery.”

Will have a negative impact on clinic flow initially, but “I think at surgery and after surgery parents will be better informed and may have less questions/concerns.”

“Efficiency has to be important, so I don’t think I know where the right place to apply this…” Would need to pilot first

Desirability

None

4

“… the values really bring in the human part of it, what it means… other real life issues that are impacting somebody’s ability.”

Minor

2

Concern with the 3 back panels’ parents would miss a page; perhaps consider placing a “last” page as a resource section with links.

“…the general anesthetic risk because when I do the teaching, from a child’s perspective, it is really scary to think that they might wake up…just having it there, I think it’s terrifying.”