Table 2 Quotes per theme

Collaboratively establishing a plan for the care and treatment of the child

HCP 3,

Nurse

“I believe that the starting point of an ICP or actually of engaging in a conversation with parents, to discuss what is important, is that a diagnosis is made that is life-threatening or life-limiting, and then you actually step into a car with each other and then you all have to navigate towards a destination that you are all not really looking for, but the journey itself, […], so who determines the journey.”

HCP 13, Nurse

“Yes. I would love it if there was one [an ICP] for every child, even if it is still the mother’s womb and we already know that something is wrong, that the plan will actually be made. Because we still make a lot of choices about who will and who will not due to time constraints, but how wonderful it is if a child just receives, well, a bit of an important diagnosis, life-limiting or we even look at which child we actually expect to end up in the ICU within a year, that preferably all HCPs will immediately make a plan for such a child.”

HCP 12,

Psychologist

“But first [the child]was six and now [the child is] thirteen and [his/her] parents have that plan [ICP], but yeah, [the child] really just wants a clean plan from the start. [the child] has no desire for everything that [his/her] parents have written in it.”

To achieve coordination and continuity of care

HCP 2,

Pediatrician

“But I do think it can contribute to ensuring that everyone involved with the family is fully informed. As full informed as possible.”

HCP 9,

Nurse

“That it [an ICP] is important to streamline and make transparent the coordination of care among all healthcare professionals.”

To achieve shared decision-making

HCP 11,

Pediatrician

“But perhaps you can also record very nicely in an ICP how you want to talk about [decisions], whether you use certain wording or whether you say, you know, when we have to make a decision, we have to act one way or another, how will we do that? Because we cannot decide to do things uninformed because we see something coming without sharing with you what happens, but we can discuss the extent to which we share with each other what is necessary to provide good care.”

To support parents and other HCPs in the care of the child

HCP 3,

Nurse

“And the other goal is indeed the GP. So that practical things become clear to them, yes, that it closes a gap that you cannot close because you cannot educate all GPs about dying children. Because that simply does not happen, so that is a very important goal of the ICP that than can be implemented. And that you can take people who are inexperienced and perhaps a bit hesitant, yes, that you can take them along and also give them confidence, yes, this is, we already have all this, so that the GP does not have to start from scratch again and does not know how to begin.”