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Table 2 Themes, quotes, and number of interviews themes were mentioned

From: Parents’ views on care of their very premature babies in neonatal intensive care units: a qualitative study

Theme Quotes Number of interviews theme was in (N=37)
Parents’ involvement   
Looking after their own baby “[The neonatal unit] are great about you being able to open the incubator and they get you very involved in looking after them, and changing nappies, and cleaning bottoms and so you’re doing as much of the care as you can”. (12, mother, D/C). 22
“I had lovely [name of nurse], who’s a great nurse, and she showed me how to change the nappies straight away which was all a bit fumbly with at first, and you’re very nervous”. (20, mother, NICU)
“It was a long time before we was allowed to change nappies. But once we were, we had to always ask permission. So she didn’t feel like ours for a very, very long time. It felt like this baby that I’d had but almost given away, if that makes sense”. (19, mother, D/C)
And I think as a mum you do feel quite helpless at that point, because you think…‘this is my contribution to her care at the moment, because everyone else is having to care for her because she’s so tiny.’ So that really was quite good for me”. (1, mother, D/C)
The challenges of expressing breast milk “I kept asking, when do I start expressing, I I’m rubbing the, trying to get it to come out but nothing’s working um… and it was about day 4, I think before they said to me, oh yea, here’s a kit, go and express”. (21, mother, D/C) 10
Normally they say don’t express or breast-feed for about 3 days if you’ve had an emergency C-section and things like this and get time for the milk. Whereas the baby unit was literally from straight away ‘oh we need some breast milk, we need breast milk, we need breast milk,’ which put [name of mother] under excessive pressure and stress, because she felt like she was letting [name of baby] down, even though she wasn’t really ready herself to actually start for it”. (4, father, D/C)
Easy access “Yeah, I really appreciated [the diary]. They sent it back with all his stuff. And I thought that was really important, cos it’s hard not being able to go and see him. But to be able to call in afterwards and read this little diary was really nice”. (2, mother, D/C) 14
[The neonatal staff] appreciate that there’s a bond between parents and baby that needs to be maintained. The biggest plus was… the (neonatal) unit got us a room over the road”. (4, father, D/C)
Staff competence and efficiency   
Communication “It was a busy environment, and so if communication had been bad I would have said, ‘I can appreciate why it was bad’, but it wasn’t, it was really good, so communication for me was number 1. Absolute number 1. And that really helped, that felt, made us really reassured. It gave us confidence throughout the whole experience. Really good”. (1, father, D/C). 19
“At [Hospital A], I used to have to keep checking the board, and I’m like ‘It says up there he’s having a scan. What’s he having a scan for?’ and they’re like ‘We dunno.’ And I’m like ‘What do you mean you don’t know?” (2, mother, D/C)
“Because you come in one day, say the day before, especially there was a guy there that, he promoted to hold her, literally whenever we was in, either of us, he would say, ‘Hold her, it’s the best thing you could do’. And then you’d come in the next day thinking ‘oh yes, I get to hold her’. And you have a different nurse that says, ‘no, no you’ve held her this week, you don’t need to hold her for the rest of the week’… and then you’d almost feel devastated that you couldn’t do that.” (19, mother, D/C).
“the other doctors had decided, that it was too soon and they needed to wait a bit longer, but nobody had told us that, so we’re expecting results, and we’re not getting anything we haven’t even had the test”. (21, mother, D/C)
Experience and confidence “…if there was someone on I’d think, ‘Oh yeah, I really like them, they seem to really know, you know, be on the ball’ and I felt confident. And I did feel very sort of reassured, erm, that she [the nurse] was very, you know no nonsense kind of like… very… came across very confident”. (6, mother, dec). 17
“It was reassuring as well, because it was almost one-on-one care. So it was like she was being monitored the whole time. If she needed anything, there was somebody there straight away. Erm, so you felt that you could leave her, and there was nothing we could do, it was just the medical staff and they needed to do what they needed to do”. (1, father, D/C).
All the doctors that were there, as far as I’m concerned, were the experts. The doctors had, you know, been in this industry for like 15, 20, 25 years. They knew, they knew their stuff inside out you know, the information was never flaky…” (16, mother, D/C).
“And both of them [the nurses] said ‘We wouldn’t continue support.’ and I think you appreciate that because you want to know. They come with many, many years of experience and they’ve seen…babies in this situation”. (32, mother, dec)
“95% of the women at [Hospital B] are lovely, you can’t fault them but if you’d ring up at night, and you’d get a certain nurse you’d go ‘Oh s**t’, because they just, they never kind of, seemed to be on the ball… It’s just your heart would sink if you got a certain nurse you’d go, ‘Oh god’, whereas if I knew I had a good nurse, I felt very confident. If I knew I had a not so good nurse, I’d be agitated’. (23, mother, NICU)
Information and explanation “And I think they were really, you know, explained everything. Every time we went to the incubator, whoever the nurse was on looking after her, you know, always explained how she’d been doing, how she’d been…they talked…it was really lovely”. (6, mother, dec). 30
She explained every machine to me: ‘That’s to monitor her heart rate’, she goes ‘Your baby’s not on oxygen, she’s on air just to help her lungs, 'cos you do know baby’s really small. Baby’s not sick mummy.’ And she explained everything to me. The machines, how they incubate her.’ (30, mother, D/C).
“Sometimes, I don’t know, things need to be explained a bit more, or like when they do the doctors' rounds, they go through all the birth details, just as a recap for everything, and there’s some things in there that it would be nice for that to be explained…I guess they do explain it to you when you first come in but they don’t.. you can’t remember, you can’t take stuff in. I think that follow up explanation of everything… cos it took me ages to ask…” (20, mother, NICU).
“While the doctors are really good if you’ve got any questions, I shouldn’t have had to get a book myself out of the cupboard…It would be good if it, you know, there’s a set structure that everybody has to go through, everybody’s given the same information, needs to be put on the baby’s file, gone through x y and z with parents”. (22, mother, NICU)
Interpersonal relationships with staff   
Sensitive and emotional support “It was almost overwhelming how lovely everyone was and just, before during and after, the whole process just really sympathetic and, and came across like they were hurting too…[The staff were] incredibly empathic and you know even, they were giving us the, the prognosis with Z, and they had tears in their eyes you know the way that they were saying it and you kind of, it makes it feel like you’re a person who is experiencing a terrible thing rather than just another number going through the process”. (32, mother, dec). 16
“[The nurse] was quite patronising and she said um, because I was adamant I just wanted them to have breast milk, and she said ‘oh a little bit of formula won’t do them any harm’… She even said, she even said to me, ‘why didn’t you have a C-section it would have been a lot easier?’ This is when I was looking over [name of baby] and I was upset, really upset, I didn’t know if she was going to make it or not’. (15, mother, D/C)
“part of you thinks that the nurse is judging you 'cos you’re not there all the time” (24, mother, D/C)
They’re constantly talking to them, when they’re changing them and so on – ‘hello love,’ they talk to it… It’s not the case of just cleaning and feeding them. You’re talking to my baby, you’re making my baby reassured”. (2, father, D/C)
“I felt like she genuinely cared, she wasn’t just doing her job she genuinely cared um, and um, yeah bless her she was just amazing with him, really really good with him”. (31, mother, D/C)
“they just said 'look, you know she’s in safe hands, you know we love her to bits you can leave her here for as long as possible, for as long as you like'”. (12, Mother, D/C)
Reassurance and encouragement “She kept willing us forward. ‘Why don’t you try this? Why don’t you do his nappy?’ I was like ‘Oh no’, very scared, but very encouraged to touch him, talk to him… Things around us were very positive’. (3, mother, D/C). 16
“They’re focusing on the bright side of having a baby. They talked to me about that ‘Oh she must be lovely. She’s a girl, she must be, sort of like, have dark hair’. And it feels great that”. (10, mother, D/C)
Feeling like an individual “Yeah, I just found our experience very good, it was very, I suppose, personal in a sense. I wasn’t, I didn’t feel like a piece of meat. I felt like a human that was passed around and people were caring…they were really willing me on and I felt like a person that was going through this and I had support around me rather than: you’re in a hospital, you’re passed from buck to buck”. (3, mother, D/C) 18
“also [nurse] was special because she treated [name of baby] like a person not like a patient, so she listened to what he was trying to tell us”. (31, mother, D/C)
  “The doctors, I think 'cos obviously they’re quite stern and they just kind of come in and do what they have to do and then kind of leave, which is a shame. They never really know your child inside out, they just read the sheet on top…I’ve had some doctors come in going, ‘Well who’s this then?’, and I think well you’ve seen her 3 or 4 times you should know her name by now, silly little things like that just, to add the personal touch”. (23, mother, NICU)  
  1. NB Although 39 parents took part, the total number of interviews was 37 because two couples asked to be interviewed together.