Setting

Under ordinary circumstances (i.e., non-pandemic conditions), parents have as a general rule unlimited access to stay with their infant in Norwegian NICUs. Skin-to-skin contact and breastfeeding are encouraged as early as the infant’s medical condition allows it. Health care insurance is publicly funded, hospital care is free of costs, and both parents are allowed full job-leave with compensation during hospitalization with their infant. Also, parents have 48 weeks of fully paid parental leave shared between them after discharge from the NICU. During NICU admission, parents live free of cost or at low cost either in the hospital’s hotel or at a parent accommodation, both in close vicinity to the NICU.

Recruitment

We invited parents of survived infants who were admitted to the Department of Neonatal Intensive Care either directly after birth from the Delivery Department or after a stay at the Department of Cardiothoracic Surgery. The infants were hospitalized for at least 14 days during the most comprehensive restriction period and were discharged from the NICU at time of invitation.

Eligible informants were screened according to inclusion and exclusion criteria through the register in the Norwegian Neonatal Network [18]. A letter was sent to the eligible participants containing information about the study. Participants were informed about the researchers’ credentials, occupations, and clinical experience, as well as how the interviews were planned. Forty-seven families were eligible for inclusion and were approached. Parents responded to the researchers by E-mail or phone for more information or for acceptance to study participating. No reminders were sent.

Participants

Nine mothers and four fathers responded positively and were interviewed. One of the families self-recruited as they had heard about the study and wanted to share their experience, even though they had not been hospitalized during the absolute visitation band for fathers. The interviewees represented nine families. In three of the interviews, both parents participated, otherwise mothers and fathers were interviewed separately. Three infants had one to two older siblings; seven had no siblings. The infants were hospitalized for mean (range) 59 (32–110) days. Their infants were born extremely preterm, very preterm or full-term.

Data collection

Ten interviews were performed by the first (NMK) and last (BST) author together. None of the interviewers knew or had been involved in the care of their child during the stay. Four of the interviews were performed in a quiet room at a university campus, and six were performed through a secure web platform (Helsenet.no), owned by the Norwegian Ministry of Health and Care Services.

The parents were asked to tell freely about their hospital stay, their experiences of care and how they experienced preparations to transfer to home or to another hospital. By letting parents tell their story they thereby told what was important for them and what they emphasized. We used the interview guide as scaffolding and for structuring the interviews (S1 File). The interviews lasted between 29 and 65 minutes (mean 49 minutes). The interviews were recorded, and notes were written simultaneously throughout the interviews, followed by a summative discussion between the interviewers directly after the completion of each interview. Data saturation was not determined in advance of the study [19]. Braun & Clark [15 p. 50] suggest N = 6–10 interviews for a small project as this. Consequently, the number of participants and interviews complied with a suitable size of sample needed to demonstrate the patterns across the data set and were small enough to focus on the parents’ experiences and the research questions [15]. All parents who contacted the researchers to participate were included.

Data analysis

We used thematic analysis with six phases, as described by Braun & Clark [15, 20]. The analysis was inductive, as we approached the data without strict theories.

All 10 interviews were recorded, transcribed verbatim, and checked for accuracy (NMK and BST). In the first phase, after listening to the interviews and discussing the notes, data corpus was read and re-read to familiarize with the data. Using medical (DF) and nursing (NMK, LMMK, BST) insights in neonatology, we profited from and were inspired by each other’s different angles, experiences, and expertise. Initial codes were generated individually by NMK and BST in the second phase. Further, the data and the initial codes were discussed and developed collaboratively. The codes identified interesting features and organized the data systematically into meaningful units related to our research questions. To obtain rigor, all themes and sub-themes were discussed by the authors until agreement. During the third phase, we searched for themes by organizing the codes into different themes with a higher level of abstraction. The themes were reviewed during phase four to assure that the themes would fit the coded data and entire dataset. The authors re-checked all quotations and the belongings sub- and overarching themes. This created a back- and forward process to increase trustworthiness. Quotations were used to emphasize the parents’ voice and the dependability of the results. In the fifth phase, we defined and named the themes that captured the essence of each of them. A scientific paper and report was written to the user organizations.

Ethical considerations

The study was approved by the Oslo University Hospital’s review board and the hospital’s Data Protection Officer (certificate number 20/16594). All potential interviewees received written and oral information. They were informed about confidentiality, that their participation was voluntary, and that they could withdraw from the project at any time. All interviewees signed an informed consent form. Recorded interviews were deleted after transcription.

Life-impacting COVID-19 regulations

In the beginning, when social distancing was generally implemented in the society, the parents’ acceptance and understanding for the strict access policy due to the COVID-19 regulation was high,” … of course, we understood the principles of reducing the number of people in the unit, we were at least as concerned as the staff ….” (Mother T). The hospital appeared as a safe zone from a more dangerous unknown outside world.

We immediately wondered how dangerous the COVID was for us …. but then we received information that children were not particularly exposed to risk; that was what we heard. Professionals were not worried, and this ease spread to us. We followed the nationwide news, but at the same time, we felt a little out of it all—in a separate bubble, thinking nowhere was safer than in the hospital… There were empty corridors in the hospital; people stayed away from each other for the first few weeks. I remember walking in the corridor, they were quite narrow, and I breathed in the other direction when I passed people… (laughs) It was quiet…. We had not been infected by passing… We knew nothing. (Mother B)

As times goes by, the parents described an experience of dissatisfaction regarding the apparent novelty of the COVID-19 pandemic situation to both staff and leadership. “They should have tried to coordinate [the information]…. There was a lot of divergent information. I wish they had written something down… I asked is there a place I can write, or a place I can read” (Mother D). Parents reported a general lack of information. Especially the fathers tried to get information on what was going on with their infant and spouse inside the hospital … “it would have been nice if I could only have 5 to 10 minutes with a doctor, who could have updated me instead of getting all the information from my wife who had so much else to think about” (Father V).

Exceptional times

Being hospitalized with a newborn infant in a NICU during a pandemic was described as a distinctive and portentous experience.

… how can it be described to outsiders how it feels to be in such a unit during a pandemic? It is very difficult. (Mother T) …. It’s intense—we’re moving in a “time in the time,” the bubble they’re talking about. That was how it was experienced because the sun went up and the sun went down, but we found no windows to get out. So, everything goes in slow motion, some kind of slow and crazy movie. (Father H)

Parents used different and multiple coping mechanisms to ease their extreme experiences and function in daily life while taking care of their families. Social media was widely used, but bonding with peers/other parents and health personnel became important coping strategies.

Struggling to become a family

Parents wanted to be together with their infant; they wanted to explore the new life with the new family member and longed for a feeling of togetherness. One father (Father K) stated: “It was kind of a difficult start for the whole family; particularly high risk for the father who was somehow disconnected in the beginning. Some may be able to recover, but not all necessarily”.

Life-impacting COVID-19 regulations

Parents in this study were hospitalized during the first wave of the pandemic in 2020. COVID-19 regulations impacted the family’s possibility to visit their infants. During this first wave, a decrease in parental visitation by nearly half was found [11]. Fathers are considered important support for the mothers by virtue of them becoming parents and having an important role in the infant’s future life [21]. At the beginning of the pandemic, there was a general acceptance of the ban on fathers in the units. As time passed and knowledge about the risk of infection transmission increased, the greatest source of frustration among the interviewed parents was related to a lack of consistent information and the closed-door policy for fathers.

Parents reported that nurses, to some extent, shared their frustration on the lack of and inconsistent information about the regulations. This is in line with research that shows how health providers experience increased stress and report a lack of clear and sufficient information in maternal and newborn care during the pandemic [22]. The explanation may be that the information given through the nurses was inconsistent. This proved rather frustrating to parents.

Later, the fathers were allowed to visit their infants two evenings per week. The interviewed fathers described how they were relieved and longed to see their infants. However, after a while, the feeling changed to frustration for some families. They questioned how infection control allowed for visitations on only two evenings when they could live together with the mothers on a daily basis.

Parents wanted clear and thorough information and expected the unit’s leadership to step up and convey this information regularly, both in written and oral forms. Informing families of intrusive restrictions impacting their lives should be a responsibility of the hospital or unit leadership [23]. Presenting equal information to all could probably have prevented some parents from having a feeling that those who shouted the loudest got the most.

There is still sparse knowledge on how fathers´ increased involvement contributes to and affects the family [24]. However, our study’s results showed that fathers’ direct involvement and presence in the NICU were of importance for hospitalized families. A closed-door policy for NICU fathers caused them to miss out on direct contact and significant information, as well as the potential loss of emotional support from medical experts. A concern of insufficient information was reported [7, 23]. The use of virtual technology, e.g., during doctors’ rounds, was recommended [25], but only one father reported having a FaceTime call with a doctor.

Breastfeeding

Maintenance of pumping and support for early breastfeeding is recommended during the COVID-19 pandemic [26]. The interviewed mothers expressed how the regulation contributed to considerable stress due to the burden of the strict schedule. Not being able to use the breast pump in the unit took time away from being with the infant. Previous research has documented the decreased availability of lactation consultants during the pandemic, restriction of donor milk utilization, and a decrease in breastfeeding rates [9]. In contrast, Malhotra et al. found breastfeeding to increase by hospitalized COVID-19-positive mothers [27]. One may speculate whether isolation and more peace and quiet could positively contribute when establishing breastfeeding. Some mothers in the present study also expressed that the regulation, with fewer people around, gave a sort of quietness and privacy which they appreciated. However, in retrospect, several of them reflected on how they strongly wanted an early discharge. This may have contributed to fewer patients practicing breastfeeding, as starting bottle-feeding meant them going home sooner.

“It’s intense”—Times out of the ordinary

Due to the pandemic, most of the mothers had already been in prenatal isolation in an obstetric ward due to pregnancy complications or involuntarily self-imposed isolation at home even before their NICU hospitalization. The mothers clearly had a distinct need to bond with other people based on a need for human contact. They sought alliances with others through the mutual understanding of having an infant admitted to a NICU.

Hence, the lack of social contact may have made the mothers more vulnerable and dependent on the mother-nurse relationship. Mothers bonded with the nurses and thereby felt taken care of in an empathic way. Health caretakers’ ability to empathically communicate and involve is known to reduce parental stress more than relaying huge amounts of information [28].

Generally, the Pandemic restrictions made it difficult to interact with peers [29]. Being together with other parents and sharing common experiences has been shown to meet parents’ emotional needs and help them cope during these extremely unordinary times [30]; additionally, peer groups have proved to constitute a useful measure for NICU parents [31]. As NICUs discontinued organizing parent support groups and closed parent rooms, some mothers organized their own support groups. This became an important part of coping with the situation and gave strength to keep up moral both during the NICU stay and after returning home, but also to initiate friendship. This parent-initiated measure worked as psychosocial support and probably also through an educational aspect, which met both effective core elements in structured interventions [32]. Here, there was no input from professionals. It could have been advantageous if health personnel contributed to educational and professional input to increase knowledge and support the parents (e.g., through telemedicine approach) while keeping with the COVID-19 regulation measures [33].

The use of social media was experienced as important by the mothers. This was only occasionally used in communication with staff, but the mothers used it to stay connected with family, friends, and each other. Social media networks strengthened social bonding and created a feeling of connectedness and, hence, may have prevented loneliness after the hospital stay.

The fathers either had limited or no access to the NICU, and never together with the mother. Psychological emotions of suffering, such as anger and sadness, may arise in such extreme situations; also, relational suffering may exist because of the restrictions [34]. This is in line with the experiences of the parents in our study. In addition, the parents did not develop a common language to describe the infant’s condition, behavior, growth, or acute events. They were deprived of an opportunity to share the daily care of the infant. This led to feelings of loneliness. How could the mother explain apnea, where the infant might look dead; explain how it diminished and the extreme fear for the baby when the father had never seen it or been there? Of importance is the mother’s effort and responsibility to inform the fathers in all aspects. How could the mother explain how an infant of, for example, 600 grams looks like in order to counteract possible paternal disconnection from the infant and its experiences and promote attachment? The mothers used pictures and films of the infant in the NICU to show and include the father in his infant’s life. We conclude that filming may help the absent parent to feel more involved in the infant [33].

In the NICU, fathers can feel like outsiders and feel challenged to find their own way to act and fulfill their roles as fathers [35]. This assumption has possibly been strengthened during the COVID-19 restrictions and applied to the fathers in this study, especially with limited access as their visitations became rather busy. In order to prepare for homecoming with their families, they needed to learn infant care skills and receive guided training from the nurses. With limited time, many fathers experienced this as stressful. For mothers who felt responsible for supplementing fathers learning without being present at the NICU, this also led to additional stress.

The COVID-19 restrictions have shown that breastfeeding mothers benefited from staying at and working from home [36]. Our study showed that some fathers benefited from the possibility of home-office and thereby had more time to spend with their new families.

Visiting restrictions are widely implemented in numerous NICUs and have been shown to affect parental presence in general [9]. Essentially, the parents experienced stress and grief over the restrictions and not being able to be together with their infant in the NICU. The fathers did not see their infants for up to 2 months but supported the mothers as best they could. Mothers had a tight and strenuous schedule; in addition, the infant might have a life-threatening illness/situation. In this space, they should develop an attachment to the infant, joint parenting, and nursing skills.

Parents stated that the restrictions affected their bonding to and attachment with the infant. Parent-infant attachment is essential for infant development. Evidence points to the avoidance of separation [37] and that parents’ presence and involvement benefit both infants and their families [38]. The presence and involvement of parents may ameliorate their infants’ neuroendocrine stress responses, accordingly mitigating or even preventing toxic stress, and may influence long-term outcomes [37–40].

In order to support parents and infants admitted to NICUs during the COVID-19 pandemic, the importance of thorough and consistent information cannot be overemphasized. Parents also need to be supported both practically and psychologically to reduce any feelings of alienation and help to build a strong, nuclear family. Parent support groups and parent peer groups should probably be continued, if not physically then digitally.

Strength and limitations

Strength of this study was the attempt to capture how families hospitalized in the NICU experience the COVID-19 measures. This study was originally initiated by the two user organizations to provide new knowledge on the user’s experiences.

Health authorities are encouraged to include users’ voice and experiences in knowledge-based practice. To explore and capture parental consequences of the COVID-19 regulations a qualitative approach is well suited, as quantitative epidemiological studies may miss out the social implications [41].

Parents were free to participate in the interviews either alone or as a couple. One may speculate if both parents were interviewed either alone or together consequently, and that this would lead to more focused data corpus. At the other hand it is important to secure that all participants feel well in the interview situation.

We had to align with the actual COVID-19 regulations in the society. Therefore, we performed both distancing in face-to-face interviews, and digital interviews, this also as the choice of the parents. Conducting in-deep interview “on distance” on the web is a new situation for most researchers, which demand critical assessment regarding privacy regulations and on how interviewing on distance might have impact on the interview situation [42]. Our experiences with the secured JOIN application were good, but parents may feel detached, but at the other hand this distance may make parents feel comfortable.

Generally, the parents appreciated the possibility to tell their story.