Table 2.

(A-D) Representative Quotes Demonstrating the Salience of the 4 Shared Decision-Making (SDM) Steps

(A) Medical Reasonableness Step (Step 1): Determine If the Decision Includes More Than One Medically Reasonable Option
Clinicians	“In my mind, I’m weighing, uh, the options for treatment, which is, uh, which is continue to watch first, or some intervention that could range from oxygen to a jaw surgery.” (MS102) “...I do think [an] important context is that there are multiple ways and multiple approaches to this...” (MS302) “There are times where I think it could go either way. And I basically tell the family that. I’m like, ‘Look, it’s your choice. You can do surgery or not do surgery.’” (MS101) “It probably just has to do with that there’s different ways to approach this...It ends up being like, ‘Hey, there’s these different options.’” (MS702)
Parents	“Then towards the end, he gave an option. If I wanted to do the blood allergy testing or not.” (MS401) “I kind of felt more like she was letting me know the options that I had. Whether to come down [on the medication] or I guess come down slowly off of it to completely afterwards.” (MS402)
Other factors influencing how clinicians approached a decision
Familiarity with the parent and their past decision-making	“So I think, probably more than two years ago, we tried peeling back meds, and he actually ended up coming in, having to go to the ED. It was just a complete stumble. And so I hadn’t forgotten that, and clearly I don’t think Dad has either. So that’s always in the back of my mind too.” (MS410) “I was probably building from what I know about them from prior visits and knowing that they’re much more likely to want to check than to not check something, not necessarily lab or anything. And so I interpreted her question to be, um, more like we’re checking again today, right?” (MS409)
Contextual features (eg, time)	“Part of it honestly, especially in the last few months, is we’ve been dealing with uh, you know, COVID issues through clinic is, um, trying to kind of get [patients] in and out of the clinic as, as quickly as possible.” (MS101)
Relevance to one stakeholder	“I think for the [decision] about [genetic testing to determine] recurrence risk, I think that was something that I felt like was completely up to them and their time and their sort of, you know, priorities in their timeline.” (MS102)
(B) Benefit-Burden Step (Step 2): Determine If One Option Has a Favorable Medical Benefit-Burden Ratio Compared to Other Options
Clinicians	“I think when it came to like thinking about the sleep study is one where I was, I definitely did a benefit burden calculation in my head...I thought this study is gonna have limited, you know, validity at a young age, and [we should get] one at a time when it’s gonna make more sense and be more valid.” (MS102) “So part of it is...how bad would it be to leave things the way they are? Um, and then the other part is, how risky is the surgery compared to how risky is it to leave something the way it is?” (MS101) “This is sort of just based on a combination of guidelines and I guess I think you know what I’m saying...clinical expertise.” (MS401) “I think I thought it made the most medical sense. . . I’ve just seen that in patients who are at risk for recurrent exacerbations... because she has lung issues, that the rate of exacerbations is just, you know, gone through the, gone down to almost zero. So I think her risk would be relatively low.” (MS403) “I think in the long run my goal was to try the bolus feeds, but I also knew there was a risk that he might have more reflux, and worsening respiratory support, and we weren’t going to know that until we tried.” (MS611)
Parents	“He gave me enough feedback and kind of enough context around why that was his suggestion that I felt like he got what I was asking.” (MS404) “We had some visibility into what [the doctor] was thinking, and that’s important for me to know.” (MS410)
Other factors cited by clinicians related to whether or not to favor one option
It’s the clinician’s role to weigh in about the options	“I remember thinking to myself, ‘I’ve got to try to convince them that this is the right thing to do.’” (MS405) “it’s, here I am, representing all the knowledge that I have been trained with, and I want to make sure that if I can, the family is aware of that understanding. I can’t wiggle on that, but I can try to wiggle on other things.” (MS408)
Assuming that the parent(s) don’t have a preference about the options	“I um, think that um, I was, um. . . evaluating that they probably didn’t have a really strong opinion, and so I weighed in with mine.” (MS403)
(C) Preference Sensitivity Step (Step 3): Determine Parents’ Preferences Regarding the Options
Clinicians	“I really wanted to gauge Mom’s comfort on, I’d like to wait an extra week and have you guys do this, and know this is the right thing. Versus, nope, I want to take him home tomorrow, and I don’t want to make any more changes.” (MS611) “[Parent preferences are] the deciding factor, really. We’re not going to twist their arm and say, ‘You have to have a tracheostomy.’ We also, in this case, wouldn’t force them to not do a tracheostomy Essentially, it’s their child, their decision in this specific situation.” (MS206) “If there’s like, observation, medicine, and surgery, and the family really wants to do medicine, and in my experience that’s not gonna do much but it’s not gonna help a lot, then I might push back a little bit to one of the other two. But I try to understand where they’re coming from and incorporate that.” (MS104)
(C) Preference Sensitivity Step (Step 3): Determine Parents’ Preferences Regarding the Options
Parents	“Someone asked us [to make sure we are on] the same page... ‘what are your goals?’ ...And I felt like they kind of understood what we wanted.” (MS206) “Him explicitly saying, ‘Does this 100% feel okay to you?’ ...gives you the opportunity to kind of go, ‘Well, yeah, I guess I am.’” (MS401) “Just her statement: ‘are you guys okay with it’? And if we’re not, then we can have some more discussions about it.” (MS406) I will say coming out of it...[the doctor] didn’t come back around [to say], “Hey, is he on board with continuing the medication as stated right now?”...It didn’t change the way I felt about the meeting or anything, but I definitely thought about it more in the context because that conversation didn’t loop around to like, “Are you good with that or is this something you still want to do?” (MS410)
Other factors cited by parents that influenced whether they shared their preferences regarding a specific decision
Previous experience with the decision or with decision-making with the clinician	“I feel like we’ve had this conversation, you know, in prior years. And I always look back at the very first time we had the conversation, and I really was like. . .‘I don’t want to do this’. And she was explaining to me why, what the rationale was behind it, and then we were like, ‘Okay, we’ll, try it.’ But then, you know, over the years, I’ve just learned.” (MS403) “Like so two or three visits ago, they were talking about [patient’s] weight increase and wanting to increase his steroids. So when we’re talking about his weight increase in how we’re changing his chemo, that to me just triggers another thought like, ‘Well, about his steroids, you know, are we. . .? Um let’s revisit that and decide if you know if steroid dose is appropriate.’ Because my number one concern is my son’s comfort...”
The nature of the available options and/or magnitude of the decision	“We’re always reluctant to put him through something that doesn’t improve his quality of life. And so if he had said, ‘Yeah, the tongue tie is an easy repair. it’s not very painful, and his quality of life could be greatly improved.’ Then I would have said, ‘Let’s do it.’” (MS104)
The presence or absence of choice	“He took his time with us to explain everything and gave us that decision. it’s not like he gave us only one option. He actually gave us the three options, so that actually made me feel a lot more comfortable because we had more to choose from, not just what that person thought was best now.” (MS702)
(D) Calibration Step (Step 4): Calibrate the Approach to the Decision Under Consideration Along a Spectrum From Parent- to Clinician-Guided SDM Based on Steps 1 –3 and Other Relevant Decision Characteristics
Clinician-family trust as well as clinician familiarity with the parents and the patient’s medical condition	“I suspect that there are some family encounters where that trust isn’t already there and that might be harder to rely on. Um, and I think, like I do think that I’ve got a framework for what he’s got going on. That makes a lot of sense. So I feel confident in this decision um, I just want families to also feel confident in the decision.” (MS102: clinician) “And the fact that he already had that discussion with me, I kind of related to him. We didn’t have to spend time in this and that was a part of the decision making in a way. I don’t know if everybody gets a continual doctor where someone would spend like 4 weeks, 4 months here and you have a big decision and knowing a lot of why where we were coming from. Looking at this bigger picture and kind of getting assurance and getting confirmation from him helped.” (MS206: parent)
Perceived urgency and seriousness of medical condition and/or unfamiliarity with medical condition	“When she was in the ER, I mean she was very ill and I mean honestly I didn’t know much about her condition. So I didn’t really know what to do or what to say. So basically, I just kind of went with what the doctor had to say.” (MS402: parent)