Table 5.

Sample quotes and main themes for implementation.

			Parents		Providers
Facilitators
	Parents and providers
		Goal-centered care is important to the care of children with medical complexity (tension for change)		“...I thought, ‘This is interesting. I think this is going to be good.’ Setting up the goals and giving me something on my side to kind of think about and work toward.” (Parent 1227, age 57 years, some college)		“...I think it’s important because sometimes the physician’s goals are not the same as the family’s goals. And so shared decision making doesn’t always happen.” (Provider 39, neurology)
		Reminders are helpful, and more flexibility around reminder frequency would have improved use; providers wanted limited reminders (individual state of change)		“...Mostly when I get emails from you and stuff and it also reminds me too that I need to check her goals and everything I have on there.” (Parent 1494, age 29 years, high school diploma)		“...And kind of the structured way of kind of connecting, whether it’s weekly, or daily, or monthly, or whatever it is. To keep on something that is important for the family. I think it is important. So that might be useful.” (Provider 33, complex primary care clinic)
		The tool helped facilitate goal-centered care (knowledge and beliefs)		“...There are so many things I need to take care of. But then, when it comes to zeroing down to the main thing that matters, in that way, Goalkeeper was very helpful for me.” (Parent 1510, age unknown, college degree)		“...And so in theory, this is a really great and I totally think that this is the way as a physician you should be thinking about it and trying to see what your family’s goals are so that you can understand what it is that they want you to help with.” (Provider 69, neurology)
	Parents only
		The tool could be accessed from anywhere, but 2 parents still used other tools (relative advantage)		“...I always used to bring it in my own binder to the doctor and it’s just a lot to carry rather than when I just have my cell phone all the time.” (Parent 1476, age 38 years, some college)		N/Aa
	Providers only
		The tool should be used at end of visit to fit into clinic workflow (compatibility)		N/A		“...I mean sometimes if it worked out that I had to do it in the beginning of the visit because you were in the room to help me out and things like that, I found that less desirable than if I was able to time it toward the end of the visit.” (Provider 50, complex primary care clinic)
		The tool opens doors in patient care that providers otherwise would not explore (knowledge and beliefs)		N/A		“...So what the patient or their family values the most. So what they find most important to them, often times that comes into quality of life decisions, for example. So in that discussion about eating, they might value being able to eat some or having their child being able to eat some food more than a 50% reduction in their seizure frequency, or even being seizure free. Whereas by default, normally I would-- we’re very focused on seeing if we can get to zero seizures. And knowing that that’s the relative value that the family’s putting on things is very, very important. Sometimes that would mean that maybe there is a reason why that is, or just as also just means important that there’ll be something to work on because there can be trade-offs between those two things. For example, higher doses of antiseizure medications might cause more drooling or less ability to be awake to eat. Does that make sense? So both things are valuable, but which one is more valuable to that family? And so that you can-- it helps you prioritize between those two goals or two potential actions.” (Provider 63, neurology)
Barriers
	Parents and providers
		The tool would have been easier to access if it was embedded in the electronic health record/MyChart (compatibility)		“...I think the disadvantages is having another thing to log into. As is evidenced by the fact that I can’t seem to get in right now I can barely keep all of my logins straight at the moment but MyChart is sticky. I have to use MyChart to keep track of-- my son has a complex medical condition, right? So between the insurance billings and keeping the appointments straight and dealing with all the different providers at Stanford, I’m tethered to MyChart.” (Parent 1150, age 45 years, advanced degree)		“...The actual use of the application is a little awkward because it requires a separate login to the website. In terms of feedback, it would be nice if that could be embedded in the chart.” (Provider 63, neurology)
		Lack of feedback and closed loop communication hindered frequent use of the tool due to feelings that the other party was not using the tool (relative advantage)		“...So right now, being able to communicate with the doctor and having them understand that there is a communication between the two of you rather than on GoalKeeper it’s only a one-way email and then they’d have to call you because there was no option for them to email.” (Parent 1476, age 38 years, some college)		“...So I wouldn’t want to use it if that kind of-- for some reason we’re just not getting reliable feedback from families. If there’s not a loop there.” (Provider 50, complex primary care clinic)
	Parents only
		Only providers could create and change goals, hindering parent engagement with the tool when goals became irrelevant (adaptability)		“...in the beginning when we first started, it was nice. But at the same time, as time goes by, it becomes a little bit more repetitive, especially when you’re not able to change things unless you go to the provider’s office or speak to the provider.” (Parent 1490, age 33 years, some college).		N/A
		Limited or unreliable internet access prevented constant use of the tool (adaptability)		“...I have limited internet data on my phone. The first time when I was able to access the first surveys, they were easy. The alert came. I was able to connect, and I was able to answer the questions with no problem. Again, in my case is not having access to technology when make this difficult for me.” (Parent 1668, age 53 years, some college)		N/A
	Providers only
		When providers perceived they were already practicing goal-centered care, they felt the tool was redundant even if they adopted aspects of the tool into their practice (relative advantage)		N/A		“...I think it is something that I do regularly as part of our visit. So I don’t know that it’s going to change my practice or very much in terms of goal-setting.” (Provider 42, neurology)

^aN/A: not applicable.