Table 2

Illustrative quotes for the top five prioritised outcomes

Prioritised outcomeIllustrative quotes from FiSh and Fever
Improvement in organ and physiological function The organ dysfunction was a big thing’ (P17, mother, bereaved, FiSh phase 1).
Probably things like heart rate coming down, blood pressure going up, his temperature improving, which it did very quickly’ (P41, mother, non-bereaved, FiSh phase 2).
It would be things like his vital signs being normal, um, so obviously temperature, breathing, heart rate’ (P01, mother, non-bereaved, Fever phase 1).
So it’s taking the measures really that the nurses are looking at, like temperature, erm, infection markers, erm, heart rate, things like that. You get glued to the screens which have all the information on’ (P82, mother, non-bereaved, Fever phase 2).
Looking and behaving more like normal self When they did wake him up he was alert and he could talk to his sister. So you know, as far as I was concerned he was actually getting over it, he’d sorted the chest infections, it was the secondary one that got him unfortunately’ (P21, mother, bereaved, FiSh phase 1).
I wanted his […] rash to stop spreading all over his body… It was spreading rapidly all over his body and his face was swelling. It was the most scariest thing to ever witness’ (P40, mother, non-bereaved, FiSh phase 2).
‘The fact that they’re more with it, um more alert. Um, ‘cause like with (child name) you know when he’s getting better ‘cause he’s got a cheeky little smile. Every parent will know in themselves when their child is getting better, um, wanting to get out, wanting to sit up, you know, having something to eat and drink’ (P11, mother, non-bereaved, Fever phase 1).
Erm, that he’s, erm, behaving more himself, so he’s maybe not, not the same as… not so lethargic, erm, not warm to the touch, not clammy, sweaty, and sort of returning to his normal behaviours’(P80, mother, non-bereaved, Fever phase 2).
Long-term effects (eg, health and development) I think developmental sort of outcomes after is quite important, you know, whether it’s had a long term effect on them’ (P8, mother, non-bereaved, FiSh phase 1).
The thing I was most worried about when, um, when we left hospital was any long-term effects. Because obviously I mean she was less than five weeks old, she’d, she hadn’t stopped breathing entirely but she’d, um, she wasn’t taking as much, many breaths as she should have done, so I was really worried about would there be any long-term development problems with her’ (P25, mother, non-bereaved, Fever phase 1).
Length of hospital stay Definitely length of ICU stay is an important one, length of hospital stay certainly’ (P01, mother, non-bereaved, FiSh phase 1).
Reduce the stay in ICU, would probably be the main one’ (P08, mother, non-bereaved, Fever phase 1).
Reduce need/time spent on treatments or mechanical support The length of time that he was sedated, which was as a result of the length of time that he needed mechanical breathing and things like that’ (P7, father, non-bereaved, FiSh phase 1).
The fewer machines that were operating with her. I mean we’d go from having 12 machines running or 12 syringes going in one shape or form. When the syringes got removed and they’d have six or four, you knew things were improving’ (P39, mother, non-bereaved, FiSh phase 2).
Less reliance on, um, life support equipment so, you know, more breathing on his own and not having to be on dialysis or, um, er, um, and him not having, not having to be, er, as heavily sedated as well’ (P08, mother, non-bereaved, Fever phase 1).
How quickly they’re able to come off intubation’ (P53, father, non-bereaved, Fever phase 2).
SurvivalWell, yeah, obviously survival should be at the top ‘cause that’s the, that’s the big one, isn’t it?’ (P08, mother, non-bereaved, Fever phase 1).
‘Survival is the main, it is the main thing’ (P78, mother, non-bereaved Fever phase 2).
  • FiSh, Fluids in Shock.