Table 2.
Illustrative quotes from parents of themes and concepts of the surgical NICU experience
| Theme/concept | Illustrative quote |
|---|---|
| Parental physical state | “It took me two days to see my son that was in the same building because I wasn’t well enough …day five I was allowed to have a 4 h pass to come over [to see this one]” (1) |
| “I’m groggy as anything. I was up for like 27 h” (3) | |
| Parental emotional state | “With my first she wasn’t off me for ten full days. I didn’t leave my house. We stayed in bed. It was wonderful. To go from that to have barely touched her foot … It doesn’t feel real.” (2) |
| “I’m terrified all the time that I’m going to do something to hurt her” (4) | |
| Effective communication | “That whole day—she might have surgery, we’re not sure. It could be today, tomorrow, next week. It wasn’t until they were packing her up that I knew for sure. It was a little stressful” (2) |
| “I don’t see how that could have got any better. He’s phenomenal. He’s really good with talking to people. It’s one thing to be an awesome surgeon but it’s another thing to have phenomenal people skills” (5) | |
| “In the beginning, you’re so emotional, you’ve got so much up here you can’t keep it all straight… to get a whole bunch of papers, I’m not reading that. You’re so fried all the time. You’re not sleeping. All this stuff going on. Now, I have to sit down and read all this and retain it to boot? Make them [more] fun, like a kid book. It’s easier to look at and listen to. The presentation can make a big difference” (1) | |
| Support systems | “There’s a website that you share the link to and they subscribe for notifications … You can download an app to your phone, open it and I’m writing a journal entry.” (2) |
| “It’s good for me… to get to know other moms who are kind of in a similar situation. Very rarely do you actually see any moms on the floor because usually [they’re] with their babies” (3) | |
| Perceived pain | “In the back of my head I’m thinking, is this going to turn into an addiction later on?” (3) |
| Hands-on training | “I find the more you come, the more comfortable you are. A month ago, I had changed a diaper or 2. Now, I’m changing lots of diapers, I’m looking at the drains, measurements and weighing diapers, putting Aquaphor on her dry skin. I am more hands-on with the small things that I can do, because there’s still a lot that I can’t. I help with the assessment to try to keep her happy while they do their thing. With time, I feel more comfortable.” (4) |
| Caregiver role | “We’re so new. This is day six but I don’t know to ask for certain things, I’ve seen them do things and I wonder if I could do that but I don’t know where the lines are and I don’t want to ask for something that is [unreasonable].” (2) |
| Meaningful experiences | “I was able to hold him while they took the catheter out… make sure he was not too stressed out when they were doing that. It was kind of nice to be able to just be near him, touch him, do something, feel helpful. To be a mom. That’s pretty much it.” (3) |
| Care team dynamic | “At the end of rounds every morning they ask, ‘mom, dad, do you have any questions?’ That is your chance. That’s your moment and you get it every day… it’s really nice and I like how the docs do two weeks on. You get that consistency and continuity of care.” (4) |
| “That was a little nerve-racking to not know who was going to be here when I couldn’t be.” (2) | |
| Discharge planning | “Having us doing more skills in hospital before we’re discharged… Have us more hands-on and the docs, nurses watching us and then saying, yeah, you guys are ready. Making sure we’re ready before baby’s discharged because it’s a whole package.” (4) |
| “We did feel quite prepared. And the reason why we can say that so confidently is because less than a week before, his twin brother was discharged. We had already gone through all of the discharge processes and procedures, so it was a bit of a unique situation. By the time [he was] coming home, we were very comfortable with already bringing one baby home. The only difference for him with the abdominal surgery was that the doctor had just said what to look for, what’s normal, what's not.” (1) |
NICU neonatal intensive care unit, NG nasogastric, number in parentheses corresponds to focus group participant