Table 4

Parents’ reactions to doctors’ roles during decision-making:

Positive evaluation by parents of doctors’ roles compatible with parent as ultimate decision maker	Negative evaluation by parents of doctors’ roles not compatible with parent as ultimate decision maker
And I guess the doctors had prepared us at the initial diagnosis what the full range of options could be. When he did relapse they were pretty clear that it was unlikely that treatment would be helpful and there was the option of did we want to try for treatment for a cure, palliative type care, do nothing or some other options. (Parent 4) So we had a view and (name of the neurologist) gave us a view and were aware it was up to us...(Parent 5) But still had it open that it's possible [invasive ventilation] but they didn't recommend it. He spoke about the quality of the child's life and how it would impact not only the child but also us... (Parent 6) Definitely it was yay or nay from us. And I don't think we were pressurised. The reality was absolutely spelt out to us and we agreed with what they said. We realised it. That was it. (Parent 1)	…and also the night he was born where I had ‘[child's name] the cardiologist he leant on the cot and said I think you should let him go tonight…. and I said you don't know us, we've made the decision you follow instructions. (Parent 13) In any decision-making for her we were irrelevant. ...The doctors, it was like the hospital owned her. And it felt like that. (Parent 19) And [name of oncologist] said,—well he said you've got no choice.... He said if you don't treat her, we'll treat her. (Parent 17)

Positive evaluation by parents of doctors’ roles compatible with parent as ultimate decision maker

Negative evaluation by parents of doctors’ roles not compatible with parent as ultimate decision maker

And I guess the doctors had prepared us at the initial diagnosis what the full range of options could be. When he did relapse they were pretty clear that it was unlikely that treatment would be helpful and there was the option of did we want to try for treatment for a cure, palliative type care, do nothing or some other options. (Parent 4)
So we had a view and (name of the neurologist) gave us a view and were aware it was up to us...(Parent 5)
But still had it open that it's possible [invasive ventilation] but they didn't recommend it. He spoke about the quality of the child's life and how it would impact not only the child but also us... (Parent 6)
Definitely it was yay or nay from us. And I don't think we were pressurised. The reality was absolutely spelt out to us and we agreed with what they said. We realised it. That was it. (Parent 1)

…and also the night he was born where I had ‘[child's name] the cardiologist he leant on the cot and said I think you should let him go tonight…. and I said you don't know us, we've made the decision you follow instructions. (Parent 13)
In any decision-making for her we were irrelevant. ...The doctors, it was like the hospital owned her. And it felt like that. (Parent 19)
And [name of oncologist] said,—well he said you've got no choice.... He said if you don't treat her, we'll treat her. (Parent 17)