Table 4.

Parents’ Preferences for Participation in Shared Decision-Making

Theme	Representative Quotations
Preference to have the physician make the decision
Mother of a 4-week old infant who underwent an LP	“…. I trust the doctor. That’s why I came to the hospital. So I think I just let him do – I think they know what they are doing, so I trust them.”
Preference to have the physician make the decision once the parents are informed
Mother of a 3-week old infant who underwent an LP	“I’m pretty forthcoming when it’s something that I feel like I have enough understanding of. Again, I’m not a doctor. I respect that you have far more training and experience than I do. But I like to understand the reasoning of things and the pros and cons and why we’re making whatever decisions we’re making.”
Mother and father of a 3-week old infant who underwent LP	“At the end, I’m still going to listen and allow them to do what they have to do….I feel as though as long as they’re breaking it down as they go along, that’s, I don’t know….enough for me….Keep me posted. I don’t even have to ask questions if you’re already answering them for me as you’re going along….Let them do their job. You don’t want to get in their way too much, you know? You don’t want to stop them or slow them down. Just go ahead, do your thing.”
Preference to defer decision-making to the physician except under certain circumstances
Father of a 6-week old infant who did not have an LP and was discharged from the ED	“Well, I think that – I’ve said it before, but I think the doctors obviously know a lot more about this stuff than I do, so if they were coming with the recommendation, there’s a 99 percent chance I would follow it. Again, the only time I would say let’s do this or let’s not do that would be if they were checking for something that the test was like, so invasive or painful. Or even financially crazy, right? It’s like such an expensive test that we’d end up having to pay for, where the chances of finding something was so slim that in our – it wouldn’t be worth it. But other than that, I feel like the decision would primarily be the doctor’s and we would just want to be informed on what their decision is and why.”
Preference to make the final decision
Mother who felt that she and her husband made the decision about an LP for their 1-week old infant after listening to the physician’s opinion	“Um, I would say for all decisions. I mean, we absolutely take the doctor’s opinion into consideration, but at the end of the day, we’d like to be the ones who make the final decision on what our daughter goes through, what kind of treatments, what kind of procedures. But definitely – we definitely would take the opinions of the doctors and the specialists into consideration.”