Table 3.

Parent identified reasons for initiating pACP

Child
Best interest	“I think if I was to get (son) resuscitated’ I said ‘I’d be doing it for myself, not for him.’ ‘I’d be bringing him back,’ I said ‘to please me because I can’t live without him. Because I feel I can’t live without him. I suppose it just wouldn’t be fair on him. Everything that he’s been through and it’s the right thing for him to do’ if I was like, (son), I said, ‘I don't think I’d like to be living. I don’t think I’d like to be resuscitated’ So I kind of put myself in (sons) shoes to make that decision for him” (P15MB)
Quality of life rather than extending life	“didn’t want to draw out, I had watched them in America having them on ventilators and tube feeding them and no quality of life” (P14MB) “She was tormented nonstop and we didn’t want to be doing anything to prolong that needlessly” (P11DB)
Parent
Questions answered	“For me, there was a sense of needing and wanting to know more and, and wanting to ask questions, but not being given a forum, a forum to do that” (P13M)
Pressure removed as discussions enabled decisions	“If you get it all down in black and white like, you can just put it away then and enjoy the rest of your life rest of his life for him. The memories without having to think about ‘Oh, what’s this and what’s that’. I even, I planned (sons) funeral in advance as well (sons) funerals was planned for five years” (P15MB)
Parent consensus	“She told me this story and I said to my husband, “we need to discuss this” [laughs] I said, because it might just be one of us there and we need to know what the other one thinks about this” (P5M)
Clarity—needing to know	“We wanted to plan the birth, be able to plan the birth. There was risks added to a normal birth, because of the condition. Also, from a psychological point of view, I would not have been able to carry on with the pregnancy without, not knowing what was going to happen” (P8MB)
Parallel planning—knowing the worst scenario plans	“This tumour has got a very high chance of recurring, so I have to have some kind of, in my mind, some kind of preparation for if, if it’s identified that it’s, that it has returned, I need to know what the plan is” (P7M)
Avoid repeating story and plans	“From my understanding of it now, from (son) and what we had done in it, is that instead of having to explain your history, when you go into a&e (Emergency Department) or anything or whatever service you're going to, you’d be able to just hand this over and they can read it and it can be adjusted to whatever needs there are at that time” (P15M)
Discharge process	“It was just, it was just part of the process[discharge] (P10DB)
Avoiding crisis decisions	“…to avoid any more awkwardness where we’d have to be asked or told something we weren’t prepared for, or not in a position to talk about. We didn’t want anything left to chance. Nothing blurry. It was all just there definite” (P11BD)
Clarity in decision making	“difference between, you know, ordinary medical care, we were very clear in our minds and extraordinary care, which may not have been appropriate for a child, like (child) ….. I think the thing about it—is this a bridge to healing? Is this going to help?” (P17M)
HCP
To inform medical staff of required levels of care	“You do you need to sit down and let the hospital know what you want, especially with a child, that they don't really know us, they don’t know her….. Very much seen as helping the medical staff in the event of landing in an A&E (Emergency Department), you know. To sort of move forward with treating her as best they could. And really, as I say, that was mostly our focus, rather than, you know, talking too much about what care we didn't want. It was more, what care did we want” (P17M)
To inform medical staff of limitations of levels of care	“…for the professionals involved, why it was important practically to have it in place” (P13M)
For HCP to be assured discussions have been thorough with parents	“…more about you wanting to re explore it and make sure we're happy with it” (P13M)