Table 1.

Examples of illustrative quotes mapped to outcomes

Outcome identified	Illustrative quote	Participant details
Absence of neonatal reflexes	She told we cannot predict when he will be fine because when the pupillary reflex is not there, when other reflexes are not there. He’s not responding to any of the treatment	Interview H, mother, (LMiC)
Gag reflex (absent)	They did a test to see if he had a gag reflex and he had no gag reflex	Interview A, mother, (HiC)
Swallow (absent)	I remember them saying to me that’s a really good sign he can swallow	Interview E, mother, (HiC)
Sleep disorders	When you’re a mum and she’s sleeping four or four and a half hours between feeds you think it’s great, you don’t think or know that could be…a bad thing	Interview I, mother, (HiC)
Ability to breathe normally and unaided	He was able to breathe on his own he was kind of fighting it straight away. That was a good sign I suppose	Interview C, father, (HiC)
Need for neonatal resuscitation	He needed resuscitating while he was being warmed up twice while I was sitting there… that was terrifying	Interview E, mother, (HiC)
Meconium passage	Personally, I used to observe some problems on the baby. It got to a point that when he would pass stool, it had blood so for me I used to ask such questions because I thought it was related with the problem with the problem that he had	Interview S, mother, (LMiC)
Ability to undertake sport	Now he has no problems (motor development), he loves swimming, watching him in the water in the pool, watching him swimming around and having fun is fantastic	Interview E, mother, (HiC)
Heightened sensory sensitivity	They also told us that she could have a sensory condition where she’d be, where she mightn’t want to be touched	Interview K, mother, (HiC)
Suffering	He was very uncomfortable and crying shaking cause obviously they were cooling him down	Interview D, mother, (HiC)
Parental involvement in care	She let me hold him earlier than I was meant to… my instinct was this can’t be bad for him to be held by his mother	Interview D, mother, (HiC)
Parental attachment with their baby	I was in the post-surgery room and my son was in the Neonatal Intensive Care Unit. No-one was allowed to see my son except my husband	Interview H, mother, (LMiC)
Uncertainty for future well-being	I missed out on so much. I kept having to hug her and if she wasn’t there or gone to Montessori or something I would have to get a pillow or something just to hug	Interview E, mother, (HiC)
Parental psychological impact of Neonatal Intensive Care Unit experience	I went back to my room and I was in some kind of shock. I remember my mum and dad came in and there were conversations I had with doctors that had been there at his birth, a lot of them came to see me over those couple of days and I have no recollection of speaking to them	Interview F, mother, (HiC)
Impact of child’s condition on parents’ relationship	Probably nearly caused our divorce. There were some very, very hard times	Interview E, mother, (HiC)
Financial burden of healthcare costs of care for infant on parents	Like financially to take her to the hospital. It brings a lot of trouble	Interview P, mother, (LMiC)
Parental ability to work	You don’t go to work, you need to stay with the baby, to look after them. So it has effect	Interview Q, mother, (LMiC)
Impact of child’s condition and Neonatal Intensive Care Unit experience on wider family (stress, disappointment, sadness, grief etc)	As a family, we are not as before, everyone is very down. It has caused a big impact in our life	Interview H, mother, (LMiC)
Effective communication between parents and healthcare providers	What’s this mean? Numbers. What’s a good number for this? What’s a good range for that? And I just, I went deep. Every night I’d come home at ten o’clock, until two or three in the morning I’d be, numbers, what’s that mean? HIE studies, outcomes, grading, HIE one, two, three, long-term prognosis, everything like you know, cerebral palsy, what comes with this. So it broke it down over a few weeks and I learned as much as I could	Interview J, father, (HiC)

HiC, high-income country; LMiC, low- to middle-income country.