Table 3.

The eight steps in the shared decision-making process

Step	Exemplary quotes
1) Develop and support partnership/setting	FGB1: “I really try to listen with close attention to adolescents to build a relationship with the message ‘I’m here if you have problems which you’d like to discuss.’” FGB2: “We aim for a good partnership, and sometimes parents need time.”
2) Review information preferences	FGB1: “I do not start to talk, I listen to find out what the child wants to know.” FGB1: “We should not assume that a child can easily talk about highly burdensome information, like upcoming death. For example, I talked with a sibling, who finally said: ‘Why did you tell me all this? I did not want to hear that.’ We need to review and to communicate the reasons for telling something and to reflect also with the parents about the importance [of disclosing information to children] to get the best out of the remaining time. […] Often, I ask the child and the parents separately and frankly where they stand in the process. They are not necessarily at the same point and we have to be very careful [...]. But there are ways to keep the right pace with both parties, reaching a partial consensus at the end.”
3) Review preferred decision-making roles	FGB1: “Regarding a yes or no decision, I remember a father waking up at night in panic, saying ‘I cannot make a decision with saying no for resuscitation.’ […] He did not categorically say no, but just could not consent to let his child die.” FGB2: “I roughly divide parents into those who have a lot of resources and those who initially need more support and help.” FGB2: “I have much respect for natural defence mechanisms [being unable to talk about something]. If nothing comes, I try it with examples, if still nothing comes, then it is just not the right time.” Also see supplemental Table S2
4) Ascertain and respond to ideas, concerns and expectations	C31: “[I’d say to the parents] we want to learn as much as we can from you about what you value and what you think, so that we can make the best decisions for your child.”
5) Identify choices and evaluate evidence from research	FGB2: “Many families are very creative in finding their own choices, which again supports their feeling of being in control, especially if [their choices] evolve from their system and not from outside […]. We need to take care that we find a good way that fits for a family.”
6) Present evidence in an adequate manner; if applicable, define limits.	B22: Parent: “There were one, two situations where I wished that [my daughter] would not have been part of that discussion, for example when they talked about the risk of bleeding, after that she really had sort of a phobia. […] I’d rather discuss certain points with the doctors alone, but after that they always included [my daughter], explaining it in a good way, I think that was important, it did not come from us as parents, but the doctors said ‘These are your parents’ ideas and fears, and we as doctors support that’.”
7) Identify (a) choice(s) within the optimum dimension	B22: Mother: “They said openly that they have little experience [with a specific treatment] [...] they left it relatively open, said to us ‘Take your time, get more information, ask questions.’” Father: “They helped us to get that information which actually was essential in that decision.”
8) Agree on an action plan and follow-up implementation	C33: “I think the shared decision-making from that perspective requires us as providers to reach out to those who have long-term relationships and continuity and may also have a perspective, as well as a relationship with the family outside the hospital.” A6: “We always have to take the consequences of our actions into consideration. Criticism can easily be understood as offensive [...]. But then we should not participate in decision-making at all. The motto rather should be: do not stand still.”