Parents’ Experience in an Italian NICU Implementing NIDCAP-Based Care: A Qualitative Study
2. Materials and Methods
2.4. Data Collection
2.5. Data Analysis
- Relationship with the NICU;
- Emotional experience related to the NIDCAP-based care;
- Organization of daily activities of parents/family.
3.1. Relationship with the NICU
3.1.1. Communication of Preterm Birth
“I remember that morning. I was writing a message to my boss saying I’m going to the Emergency. ‘I don’t know if I can get back in the afternoon; at most see you tomorrow.’ And instead, I never came back.” (Mother 12).
3.1.2. Relationship with the NICU Staff
“I really like that in the NICU when you enter you are not [a surname]; you are not [surname]; you are not [surname], but there is [name of infant] [...] The care is centered on the baby; there are no timetables [...] In the NICU you were the dad and mum of your infant, there were no different treatments of an economic nature; huge. The NICU is a world that works perfectly, I even arrived at 4 am and there were people welcoming me.” (Father 1).
“I felt gratitude for those people who helped me a lot, because it’s not easy; you also need that contact. The fact that as soon as a full-term baby is born, the nurse immediately helps show how to bath the baby, how to change the nappy, which I did not do [...] With [name of the baby] it was more complicated; not everyone had the patience to get there and teach you, but there were those who went beyond your expectations and I appreciated this a lot.” (Mother 7).
“She [nurse] pops up and says, ‘Well, at most we can discharge her home with oxygen,’ as if she said, ‘Let’s have a good coffee.” (Father 2).
“We asked and always had an answer; a lot changed in that moment.” (Father 4).
3.2. Emotional Experience Related to the NIDCAP-Based Care
3.2.1. Reactions at Birth
“And lucky it was so unexpected because one cannot prepare for such a thing; it is not humanly possible to prepare for such a thing.” (Mother 2).
“It seems that we were experiencing something out of our own world. I don’t know—as if we were out of this thing [...] That is, something that we could not even decide or be involved in because everything happened so quickly that, in an automatic way, which in any case for the health professional is a bit automatic; caesarean delivery, preterm babies—it is known that they are admitted to the NICU and lots of things happen; however, in my opinion, no one focuses on what the couple is really experiencing.” (Mother 4).
“... And all of a sudden you find yourself without your babies in your womb and you don’t even have the possibility to see them, to touch them. [The father] was taking photos, he was going upstairs, he was telling me about [...] but you don’t have them with you anymore, you don’t see them, and so, yes, that was it [...]. When you realize that they would have been born soon, somehow you try to rationalize it. When you don’t have them, you cannot touch them.” (Mother 11).
3.2.2. Reactions during Hospitalization
“And you have to do an act of trust, because you can’t rely on the decision of anyone; you really have to do an act of trust and it’s very difficult [...] When I told you about a daily stand-by routine it was because at a certain point you have to trust the people you are dealing with.” (Mother 2).
“[...] Every day as soon as I got there, I felt the need to give him my hand and felt that he held me, that is, I felt that he needed this support. Even if he was small, I think he felt that contact [...]. And afterwards he let my finger go and after a while I was aware that he was looking for that contact again; he tried to move his hand and he was looking for my finger. According to me, he gave the first signs of reaction, that he wanted to react to that situation. I say things that may not have anything to do with it, but they were my sensations.” (Father 8).
“’When you get inside the NICU you’re like inside a blender.’ It’s so true. On the second day, when I arrived, we were welcomed by a doctor and a nurse, and they asked us, ‘What do you know about the NICU?’
And we answered, ‘Nothing.’ And then they start to explain; they tell you there are days… Here it’s like a swing—days that are going very well and other days that are not; this is a metaphor that has never been more adequate.” (Mother 8).
“Be happy when you hear ‘stable.’ However, it is something you learn over time. You don’t get it right away, in fact.” (Mother 2).
“I remember one thing that impressed me right away—that is, to see the ease with which they [NICU staff] maneuvered them [the infants], moved them, when they lifted them up to change the bed, the nest. I said, ‘but oh my God, how do they do it!’ It seemed to me that I would break her at any time with all those wires. I remember that at the beginning they made me very afraid, and I said, ‘but how can I take her in my hands with all those wires? What if I displace something, if I hurt her?’” (Mother 10).
“I remember fondly the first skin-to-skin. It was beautiful. I even had the shape of his tiny ear on my chest. And he was even intubated when I picked him up; he had the tube [...] All the alarms sounded, and I was turning around. And when the nurse pulled him off my chest, he was always standing there with his hands on me; he wanted to be there.” (Mother 7).
“I was the first to be involved, because I was hospitalized, and I was constantly there. I remember those nappies, they were super small... I thought, ‘Oh god, now?’ Instead, I changed my mind and I started... The first two [nappies], oh god let me see; ‘look at me,’ but then I didn’t think any more, even if... I waited for the nurse to ask me, ‘Do you want to change her?’ Ready! I’ll take care of it; yes, yes, yes, even with all those wires, one hand on one side, and the other hand on the other side.” (Mother 9).
“But as long as they’re in the NICU and someone else is taking care of them, you always run the risk of feeling like a spectator, as if sometimes your babies are not really yours; so, the chance to do skin-to-skin contact makes you feel, ‘Okay she’s my baby; she’s mine. I have her for a while.’ I cannot keep her because anyway when you go home you leave them there; they stay there and that always makes you feel a little bit in between, not having them with you.” (Mother 11).
“[...] And I collapsed... It is not possible; it’s all my fault; the sense of guilt for the preterm birth of your baby cannot be overcome. I had a hard time picking him up; his father took him.” (Mother 7).
3.2.3. Experience with Other Parents in the NICU
“In my opinion, one of the most difficult things in the NICU is that you share your experience with other mothers who are living the same experience but in a completely different way because the clinical conditions of their infants are totally different. Then, you share a bit of the happiness and the sadness of other parents because you feel it, even if it’s not your daughter who has that problem or makes that progress, and you have to force yourself not to see other parents’ emotions or at least I forced myself not to.” (Mother 2).
3.2.4. Emotions at Discharge
“When I left the NICU, I started to cry. I was happy but I was a bit lost, I was sorry to leave because I felt that I was leaving a nest; it was really a strange feeling because I was so happy to leave, and I said, ‘And now what should I do, and now how do we manage it by ourselves? And saying goodbye to everybody was very sad because it had become my routine; it had become a sort of second family for us; it was very strange to leave—beautiful but strange.” (Mother 3).
3.3. Organization of Daily Activities of Parents/Family
3.3.1. Father’s Role
“In that moment, I found myself completely on my own having to inform her parents, and my mother. I had to manage the situation; I had to accept that I had become daddy of who knows what it was, because she was such a little being that I was even struggling to realize it.” (Father 2).
“It went really well. I always have in mind the three and a half hours of skin-to-skin that I did with my daughter. I managed to hold her; she never moved for three and a half hours; she was great. I remember it well because that was when I held her the longest. The others [SSC] were also beautiful; that one I remember especially because it was the longest, and I remember it well.” (Father 11).
3.3.2. Organization of the Daily Activities of Parents/Family during Hospitalization
“Well... I tell you I could do it because he [the father] was there and I could do it; I had the need to stay in the NICU with my daughter, he had the need to continue to do the things he did before [...] Not all families can afford the fact that the mother stops working to stay in the NICU with her daughter; this is not taken for granted.” (Mother 2).
“We started fighting so much as we never did before; however, we realized that I would make it. I physically gave birth to her, but psychologically it was a birth of both of us, a pregnancy carried on by both of us. [...] We fortified ourselves.” (Mother 3).
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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1.1 When and how did you know that your infant would be born before the expected date?
1.2 When and how did you get to know your infant for the first time in the NICU?
2.1 Do you remember how and who explained to you how to hold him/her (skin-to-skin contact) for the first time?
2.2 Do you remember how and who taught you to bottle feed and/or breastfeed him/her?
2.3 How did the activities of daily life change within your couple during your infant’s hospitalisation?
2.4 What was the relationship with the parents of the other hospitalized infants?
3.1 When and how were you told you were going home?
3.2 What would you like to forget or remember about the experience with your infant in the NICU?
|Relationship with the NICU||Communication of preterm birth||(F2) “So, at that moment I would have preferred that they had explained it to me. In the obstetric unit there was a very nice doctor who came to talk to me as if my baby had little hope of surviving; I did not know anything about preterm birth. And she said to me, ‘Well ... if it is born, ... if it is born…’’If it is born, tell me: what should I prepare for?’ ‘If it is born, there is a unit.’ Ah well then, if there is a unit that takes care of these things, I’d rather resign myself.”|
|Relationship with the NICU staff||(F3) “I used to say it; what those guys [NICU staff] do is 10% support for babies, 90% support for parents because I realize that a new parent who is facing such an experience asks even the most stupid and silly questions, and they probably answer those questions 100 times a day and they have to do it with a smile, reassuring us because a question that seems stupid to them helps a parent to be calm and not worried; so I realize that their work is not limited to taking care of the babies; rather, taking care of the babies is a small part; there is a lot of psychology behind it.”|
|Emotional experience related to the NIDCAP-based care||Reactions at birth||(M7) “The doctor comes to me and tells me, ‘Are you aware that your infant may not make it?’ ‘How can he not make it?’ Then I remember his leg. I saw only that one, from my position I saw only that one leg moving and I said, ‘He is alive.”|
|Reactions during hospitalization||(M12) “[...] It’s difficult for me to explain it... In the sense that the feeling of being a mother, of becoming a mother has matured, but maybe it happens also with healthy baby, it takes time to develop because, maybe, when I was at home, I felt more like an unexperienced nurse.”|
|Experience with other parents in the NICU||(M11) “[...] They (other parents) were our reference. We looked at them and thought, ‘They are now in the next room; in a few days it will be our turn too. They (other parents) are now in low-intensive-care; in a few days it will be our turn too; so, they were sort of our reference.”|
|Emotions at discharge||(M4) “Anyway, it’s an experience (staying in the NICU) that makes you grow too... so much... and it is an experience that makes you understand also the importance of small things.”|
|Organization of daily activities of parents/family||Father’s Role||(F4) “I was always there, and while she was in the operating room in the afternoon, I was in the next room and I couldn’t wait for someone to come out, and tell me how she was, and [...] waiting for someone to come and comfort me that everything went well was very long […] I waited outside the NICU for about 4 h.”|
|Organization of the daily activities of parents/family during hospitalization||(F7) “The one who kept us together was her sister. We didn’t want to burden her too much; we wanted to give her a sort of normality; we had to maintain a certain restraint, certain behavior in order to give her normality, even if we were traveling on parallel tracks, on two different tracks.”|
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Bertoncelli, N.; Lugli, L.; Bedetti, L.; Lucaccioni, L.; Bianchini, A.; Boncompagni, A.; Cipolli, F.; Cosimo, A.C.; Cuomo, G.; Di Giuseppe, M.; et al. Parents’ Experience in an Italian NICU Implementing NIDCAP-Based Care: A Qualitative Study. Children 2022, 9, 1917. https://doi.org/10.3390/children9121917
Bertoncelli N, Lugli L, Bedetti L, Lucaccioni L, Bianchini A, Boncompagni A, Cipolli F, Cosimo AC, Cuomo G, Di Giuseppe M, et al. Parents’ Experience in an Italian NICU Implementing NIDCAP-Based Care: A Qualitative Study. Children. 2022; 9(12):1917. https://doi.org/10.3390/children9121917Chicago/Turabian Style
Bertoncelli, Natascia, Licia Lugli, Luca Bedetti, Laura Lucaccioni, Arianna Bianchini, Alessandra Boncompagni, Federica Cipolli, Anna Cinzia Cosimo, Giovanna Cuomo, Michela Di Giuseppe, and et al. 2022. "Parents’ Experience in an Italian NICU Implementing NIDCAP-Based Care: A Qualitative Study" Children 9, no. 12: 1917. https://doi.org/10.3390/children9121917