TABLE 3.

Participant perceptions of the ACP discussion.

Theme	Coding definition	Sample quote
Positive experience	Experience was found to be helpful or beneficial	“It is really good to know what he wants. allowed me to see where she was coming from, not just as a patient, but also as a person. Created open space for her to discuss difficult topics with me.” (provider) “This was a very intimate conversation, it opened doors for us. It brought trust between us that we can now talk more openly. First time we could do this. It was a true gift to me as his mom, to our relationship, and to our whole family.” (family member)
Difficult experience	Experience was burdensome, emotionally, for the participant	“Very hard. I choked up but had to remember this is not happening now, and we need to talk about all of it.” (family member) “Very intense. I didn’t expect to get so sad. It’s so much more thorough than previous conversations.” (Family member)
Voicing My CHOiCES provided an opportunity for discussion	Benefit of the actual ACP guide was endorsed	“It was nice for this to be available and not just all on me to remember everything she said. Makes it easier on me. And it provides us a vehicle to expand on her thoughts and preferences if she doesn’t respond to this next treatment.” (family member) “The document is great because it provides a medium for the conversation. It is also great that it allows conversations to happen when we aren’t in crisis, this makes it easier to talk about these things.” (family member)
Provided relief	Participant noted feeling better having had the conversation	“I was glad he had an opportunity to talk to someone other than me. Handling this better at his home center. Glad he’s not holding things in. I am more relaxed that he is less stressed. I never want to think about these issues, but I am so relieved since we are both thinking about “it” and neither knew how to broach the subject.” (family member) “Relieved because we were not talking about what was happening.” (family member)
Created worry/anxiety	Experience contributed to psychosocial distress	“There is a lot of pressure/burden on me to be her #1 and her parents aren’t even on the list (or aren’t prominent on the lists of people). It is kind of stressful to think she needs me that much.” (friend) “A lot on me with the family dynamics– I’ll be the one to do a lot. Sad/scary to think about going down that path.” (Family member)