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. 2023 May 18;29(3):263–274. doi: 10.1177/10748407231167874

Connecting to (Re)connect: Video Calling as a Resource to Unite Families and Children in a Pediatric Intensive Care Unit During the COVID-19 Era

Erika Sana Moraes 1,, Ana Márcia Chiaradia Mendes-Castillo 1
PMCID: PMC10196685  PMID: 37199322

Abstract

Video calling emerged as an important resource during coronavirus disease 2019 (COVID-19) to reconnect child and family, bringing the possibility of communication even during isolation. The objective of this study was to understand the experiences of families who communicated with their children through video calls during isolation by COVID-19 in the pediatric intensive care unit (PICU). This was a qualitative study employing the theory of symbolic interactionism and the research method of grounded theory, with 14 families of children in PICU who used video calling as a communication resource. The data were collected through semi-structured interviews. The analysis revealed the main category of “Connecting to (re)connect: Video calling as a resource to unite families and children in PICU in the COVID-19 era,” from which a theoretical model explaining the experience was built. Video calling is an important resource to mitigate the effects of family–child separation during hospitalization, and its use is encouraged in other contexts.

Keywords: pediatric nursing, coronavirus infections, communication, family relationships, pediatric intensive care, telecommunications


In late December 2019, Chinese authorities informed the World Health Organization (WHO) of an outbreak of pneumonia in Wuhan, Hubei, China province. On January 7, 2020, a new type of coronavirus (identified as severe acute respiratory syndrome coronavirus 2 [SARS-CoV-2]) was isolated, and a few days later, the disease associated with it was named “coronavirus disease 2019” (abbreviated as COVID-19). The first death caused by COVID-19 occurred on January 9, 2020, in Wuhan, and since then, it has spread worldwide, becoming a pandemic (WHO, 2020).

In Brazil, according to the Ministry of Health (2023), the first confirmed case of COVID-19 occurred on February 26, 2020. In March 2023, Brazil had 37,145,514 infected people and 699,634 deaths.

Efforts were made worldwide with the aim of containing the pandemic; however, the number of people affected, hospitalized, and dead continued to rise. This situation led to overcrowding in hospital services around the globe. Among the actions that were implemented worldwide, we can highlight the various forms of social distancing, from the isolation of cases and contacts to the lockdown of activities and movement of people (Cavalcante et al., 2020; Souza et al., 2020).

The global emergency caused by COVID-19 suddenly changed the way we communicate with families in all disease care settings. For several years now, health care systems have severely restricted or eliminated the family presence of all patients (Hart et al., 2020). Thus, health care professionals have had to manage the consequences of this isolation for patients and families (Carlucci et al., 2020; Gruppo di Lavoro Intersocietario “Comunicovid,” 2020).

In the pediatric care setting, children with COVID-19 appear to have a milder clinical course compared with adults (Souza et al., 2020). Still, the severe restrictions used to reduce transmission in the pandemic of COVID-19 also reached pediatric care settings, often leading to separation between hospitalized children and their families.

This separation has threatened the model of care known as “child and family-centered care.” Physical distance has a direct and profound impact on the delivery of hospice care of this approach, the pillars of which are based on, among other factors, information sharing and collaborative care (Kuo et al., 2012). Without the family’s presence on the unit, the challenge has become even greater—especially in critical care settings.

The hospitalization of a child in a pediatric intensive care unit (PICU) causes the family to suffer deeply, as they can define this environment as a place to die (Bousso & Angelo, 2001; Côa & Pettengill, 2011; Hagstrom, 2017). In this context, communication and information sharing are primary needs of families—and any impediment in this process can also be another source of suffering (Hill et al., 2018). However, COVID-19 placed a wall between professionals and families, requiring new forms of communication and closeness to guarantee adequate assistance to children and their families (Hauser, 2020).

In the context we researched, the pandemic imposed several changes: Two isolation beds have been designated to children suspected or confirmed to have COVID-19, and when the number of children in isolation exceeds these two, they have been accommodated in the PICU hall. In the first year of the pandemic, this situation determined that the unit closed for all family members of the other hospitalized children. There was a rest room for family members, which was deactivated for a period of 1 year, the initial period of the COVID-19 pandemic, and thus, it was established that the companion would only be allowed entry during the daytime. For children in isolation, no companion was allowed. In these cases, contact between the team and the family was made through phone calls.

In this sense, in our pediatric intensive care service, we soon realized that the isolation imposed by COVID-19 reinforced something we had long known: The harm caused to the child by a hospitalization without the presence of the family may be worse than the disease itself. Thus, we have tried to react quickly to this demand, seeking new ways to establish communication between children hospitalized in PICU and their families. We found that the use of technologies, such as video calls through tablets, has been employed to comfort patients in moments of maximum stress (Sonis et al., 2020). From this care need identified due to the pandemic of COVID-19—and aiming to promote closeness between child and family—we developed a proposal that aimed to obtain a tablet so that video calls could be implemented in the PICU, for patients and families who were prevented from staying together during hospitalization, as a direct or indirect consequence of COVID-19 (Moraes & Mendes-Castillo, 2020).

Since its approval and implementation in our setting, 70 families have used this method of communication with their children. Nurses have been mediators of this intervention, managing the phone contacts and video calls with families for children who were in isolation; for awake children, the tablet was delivered to them and for the unconscious ones, the nurses held and directed the device according to the needs of the family. The parent–child interactions were determined by each family necessity and choice: For awake children, they usually talked freely by the video calls; for infants, the parents talked to them, and they interacted through a smile or touching the device. As this is an innovation in the unit, it is of utmost importance to understand the experience of families who have communicated with their children through video calls during this period, so that it can be used, not only in the service itself but also to allow the same initiative to be applied in other contexts of care for pediatric patients and their families—or even translating it to other care settings, such as for newborns, adults, and the elderly. Thus, the objective of this study was to comprehend the experience of families who communicated with their children by video call during isolation by COVID-19 in a PICU.

Method

Study Design

This is a qualitative study, which used the theoretical framework of symbolic interactionism according to Blumer (1969) and the research method of grounded theory, according to Strauss and Corbin (2008).

Setting

Data collection was carried out in a PICU of a teaching hospital of a university in the countryside of São Paulo, Brazil. The PICU has 20 beds, two of which are isolation beds. The hospital treats highly complex patients, being a reference for pediatric patients with COVID-19.

Participants

Fourteen family members of children hospitalized in PICU who were isolated from their children as a direct or indirect result of COVID-19 and who used video calling as a communication resource participated in the study. Inclusion criteria were the following: family members of children who were in suspected or confirmed isolation from COVID-19—or who, indirectly, were affected by the pandemic and could not be present during hospitalization in a PICU for more than 24 hr—and who made at least one video call. As an exclusion criterion, we did not include the families of children who used the video call technology exclusively for extended family members.

Theoretical sampling directed the data collection, with the purpose of seeking participants who maximized the possibilities of understanding the variations between concepts and of making dense categories in terms of properties and dimensions. In this way, the sample was formed during the research following the analysis process, based on the gaps still existing to develop the theory (Strauss & Corbin, 2008).

Among the 14 family members interviewed, nine were mothers and five fathers, and formed three sample groups, the first one consisting of six family members. The first sample group consisted of the initial group of children who needed to be isolated. When analyzing the data from the interviews and noting that the common characteristics of these participants, it was apparent that all family members were young children, mostly infants, and the oldest child being aged 2 years, and some of them were unconscious by the disease’s severity.

Therefore, the second sample group was built with the intention of eliciting more information about children who had more interaction with their parents during the video call. This group included children who were older in age and was composed of five family members of children and adolescents with ages ranging from 3 to 15 years.

After answering the questions of the second sample group and understanding that the data did not present more variations, being dense in properties and dimensions, the third sample group was composed of three family members and defined as the sample group for data validation. For this specific group, we presented the data obtained in a systematized way, asking them if they saw themselves in these data, if they had the same feelings, and if they had anything to add regarding the experience.

Table 1 presents the main characteristics of the participants.

Table 1.

Characteristics of the Participants.

No. Sample group Child Age Diagnosis Days in isolation/absence from family Reason for isolation No. of video calls Variation in duration of each video call, months Participant Kinship Age, years
1 I Vitor 3 months Diarrhea and vomiting 4 Child’s COVID-19 suspicion 1 2 Taís Mother 21
2 I Clara 2 years Hydrocephalus 19 Positive child COVID-19 1 3 Isabel Mother 23
3 I Gabriel 1 year Chronic pneumopathy 5 + 4 Difficulty with transportation secondary to pandemic COVID-19 6 1–3 Gleice Mother 28
4 I Hugo 1 month Bronchiolitis 13 Mother’s COVID-19 suspicion 5 1–2 Joana Mother 30
5 I Paulo 3 months Congenital heart disease 10 Mother’s and child’s suspected COVID-19 5 1–2 Giovana Mother 33
6 I André 3 months Congenital heart disease 20 + 13 Father (companion) caring for mother (psychosis) 15 1–3 Afonso Father 34
7 II Kelly 7 years Lupus 9 Child suspected COVID-19 and father COVID-19 positive 11 1–5 Roberto Father 39
8 II Giulia 15 years Chronic kidney disease 3 Distance, difficulty with transportation secondary to pandemic COVID-19 2 1–3 Vanderlei Father 39
9 II Marcos 3 years Asthma 3 Number of suspected COVID-19 patients exceeds isolation beds 1 1 Eduardo Father 34
10 II Lucas 13 years Arteriovenous malformation 6 Pregnant mother unable to stay due to COVID-19 4 5–6 Mara Mother 37
11 II Harry 3 years Inborn error of metabolism 5 Mother’s suspected C OVID-19 4 2–4 Elaine Mother 41
12 III Aline 6 months Spinal muscular atrophy 7 Mother’s suspected COVID-19 1 2 Teresa Mother 22
13 III João 4 years Hydrocephalus 5 Parents positive for COVID-19 4 1–2 André Father 35
14 III Joice 6 years Congenital heart disease 7 Mother positive for COVID-19 7 1–5 Juliana Mother 25

Note. COVID-19 = coronavirus disease 2019.

Data Collection

Data were collected through semi-structured interviews from February 2021 to May 2022. The access and approach by the main researcher to the participants occurred during the period of hospitalization in the PICU at which time they were informed about the study and presented with the free and informed consent term. Participants were included only after they signed the term. After the acceptance, a place and time of preference of the participants was chosen for the interview.

The interview was carried out based on two triggering questions: “Tell me how the experience of being isolated from your child during his stay in the PICU was for you” and “Tell me about the experience of approaching your child through the video call.” Through the conversation that was generated from the triggering questions, new questions were asked, with the objective of understanding in depth the experience and the concepts presented. The interviews were fully digitally audio-recorded and transcribed soon afterward, and lasted an average of 22 min, totaling 305 min of recorded audio.

Data Analysis

The data analysis occurred in a constant comparative manner following the steps of open, axial, and selective coding, according to the steps of grounded theory (Strauss & Corbin, 2008).

Ethical Considerations

The research was approved by the Brazilian Research Ethics Committee, under opinion no. 4.379.552, and respected all ethical principles. To ensure confidentiality, the children and participants were given fictitious names.

Results

The constant comparative analysis of the data allowed us to appreciate experiences of families who communicated with their children by video call during the isolation imposed by COVID-19 in a PICU. It can be understood through six categories that integrate with each other. Thus, it was possible to identify the main category and build an explanatory theory of the phenomenon, based on the paradigmatic model proposed by Strauss and Corbin (2008).

Figure 1 illustrates the theoretical model “Connecting to (re)connect: Video calling as a resource to unite families and children in PICU in the COVID-19 era,” forming the main category which integrates all categories and subcategories, presented below.

Figure 1.

Figure 1.

Connecting to (Re)connect: Video Calling as a Resource to Unite Families and Children in PICU in the COVID-19 Era.

Note. PICU = pediatric intensive care unit; COVID-19 = coronavirus disease 2019.

Suffering the Disruption in Family Integrity

The family with a child hospitalized in the PICU due to a critical illness is involved in a social symbolic world from which all experience develops, synthesized by the category “Suffering the disruption in the family integrity.” This context encompasses the subcategory “suffering,” which includes suffering due to the severity and uncertainty of the child’s clinical condition and the unknown environment, which imposes constant new terms, equipment, drugs, and procedures. The admission to intensive care disrupts everything that family and patients are used to in living as a family.

In the category “Suffering the disruption in family integrity,” there is also the subcategory “Giving meaning to hospitalization and critical illness,” in which the family experiences the fear and anguish of leaving the child in a space that, in this culture, has the meaning of a place to die. The imminent possibility of death and the definitive separation of the child increase the context of pain and suffering of the family.

In our minds, obviously, the ICU is a high-risk zone, you know? It is when the person is very serious and everything else. So, we were very desperate about that, you know? (Taís)

Even though I knew it was necessary because of the surgery, at first sight all this is disturbing, intubating, they say it is serious. You hear ICU and think you are going to die. (Juliana)

As demonstrated, this category comprises the context from which all variances of the phenomenon originate: the suffering of having a child hospitalized in a PICU, resulting from family breakdown and the meaning attributed to this unit.

Making Difficult What Is Already Hard: The COVID-19 Era

These families, however, in “Suffering the disruption in family integrity,” experience an additional unprecedented event: There is in the world a new disease of pandemic proportions, COVID-19, which has drastically changed not only the lives of everyone around the globe but also hospital norms and routines. Thus, within the context of “Suffering the disruption in family integrity,” COVID-19 caused the suffering of those who were already suffering to increase exponentially: “Making difficult what is already hard.”

This category involves the dimensions of suffering, fear, and uncertainty caused by hospitalizing a child for COVID-19, as well as being away from the child because someone in the family has the disease. This represents the subcategory “suffering direct effects of COVID-19.” The rupture in family integrity, which is already present at the time of hospitalization in intensive care, becomes even more critical when the diagnosis of COVID-19 makes it impossible to continue as the child’s companion, “making difficult what is already hard.”

This thing of having a child in the ICU, in the situation he was in, plus the suspicion of COVID, was like a pile of clothes, you throw an extra one on top of it every hour and at some point, it collapses—and the pile is us. (Taís)

The category “Making difficult what is already hard” is also experienced by families that were not directly affected by COVID-19, but that, even so, are suffering from the impositions precedented by the pandemic, due to new rules and protocols, such as restriction of visits and difficulty in obtaining transportation to move around and be with their children. This comprises the subcategory “enduring the impositions enacted by COVID-19.”

Ah, it is difficult, isn’t it? COVID limited the visits; COVID limited us from being with him (son), right? (Eduardo)

She has been hospitalized several times, you know, and it was the first time we had to leave her alone, it was very bad. [. . .] Now, with all this complication of COVID, you know, it changes the routine, which makes what is already difficult a little more difficult. (Vanderlei)

This category provides evidence that a new and overwhelming element is added to this context of the PICU described as one of intense suffering, the COVID-19 pandemic and its severe restrictions adding more suffering and uncertainty. Thus, the category “Making difficult what is already hard” has been comprehended as the cause of the phenomenon.

Being Disconnected From Your Child

The family, “Suffering the disruption in family integrity,” facing the additional difficulties of “Making difficult what is already hard,” finds itself facing a difficult experience, which is to recognize itself “Being disconnected from your child.” In this situation, which already involves the experience of hospitalization in a PICU and the direct and indirect effects generated by the pandemic of COVID-19, families are informed that they need to leave their child alone in the unit, in isolation. The impossibility of being with their child deeply shakes families, who consider their care as essential not only to their child but also to their own sense of parental identity. Not being able to be with the child is interpreted as an imposition for the parents to stop fulfilling their role, which represents the subcategories “suffering from full separation” and “feeling that they have abandoned the child.”

So, it was very tense, right, very difficult. I usually stay with him in the hospital, taking care of him; to leave him here, is to leave our motherly care. (Gleice)

I felt as if I were a mother who was abandoning her child when he needs it the most. It was a very annoying, great pain. It’s a pain that I was abandoning him, but I wasn’t, right? There are many people here giving him attention and taking care of him, but it was this feeling that I felt, of abandoning. (Joana)

The difficulty of getting news and maintaining contact with the unit to keep informed and somehow feel connected even amid the separation imposed by COVID-19 represents the subcategory “experiencing the impact of the news shortages,” increased the anguish experienced by the family—“being disconnected from your child.”

I called, nobody answered [. . .] I was like at home, I was anguished, I wanted to know about my daughter. (Isabel)

In this category, the family experiences the disconnection “being disconnected from your child” originated by the cause of the phenomenon, the COVID-19 pandemic, given the impossibility of being close, lack of news, and the complete rupture of the role of caregiver. Thus, this has been considered an unexpected fact within the context of hospitalization in the PICU for the family.

Facing Barriers to Reconnect With the Child

In response to the category “being disconnected from your child,” the family shift, trying to meet the demands generated by this hard and abrupt separation. Thus, the category “facing barriers to reconnect with the child” represents this process, which involves the active search for information about the child’s clinical condition—with the subcategory “seeking information about the child.”

I called every day, at 4 o’clock, because they say that this is the only time you can call, from 4 o’clock to 5 o’clock. The doctor or a nurse would talk, they would always tell me everything that had happened, what happened that day with him, explain everything clearly. (Giovana)

If it were up to us, I wanted to call her all the time, I wanted to know how she was doing all the time. But I couldn’t call all the time. (Juliana)

However, with the category “facing barriers to reconnect with the child,” the family recognizes that—even if they receive all the information pertinent to the child’s clinical picture and have all their doubts answered—the impossibility of seeing their child seems an insurmountable obstacle that still keeps them in the condition of “being disconnected from your child.” The family realizes that, besides knowing, there is a strong need to see the child, to give meaning and significance to the information received. Seeing is believing—is the essence of the experience of families that seek to reconnect with their children in this context and represents the subcategory “needing to see the child to make sense of the information.”

But, when we can see the image, we can have a better notion, right? We get worried about not knowing, you know? People sometimes say: the procedure is going as expected, right? Wow, and what is expected? And then, when you see it, it becomes more tangible how things are going. (Mara)

And so, because it is one thing to say, Oh, he is fine. It’s another thing to see that he’s fine. Because there is a big difference between me calling there and them saying that Harry is fine. And seeing him? Unfortunately, we have a lot of eyes. Do you understand? So, we only believe if we see. Because when you see, you can really see if he is well. Just to say that you are well, you don’t know what good is, because sometimes you say you are well . . . What is well? Sometimes my well is not your well. (Elaine)

I need to know what is going on and I need to see it to make sure that everything is right with him and that he is well taken care of. (André)

This category is the process of action/interaction of the family seeking to (re)connect, and they are “facing barriers to reconnect with the child,” that encompasses the impossibility of receiving information in the way they would like, as well as, the necessity to see the child to understand and give meaning to the information.

(Re)Establishing the Connection by Video Call

Faced with the demands of the family, the possibility of seeing the child using technology emerges as a condition that mitigates the impact of isolation, “(Re)establishing the connection by video call.” With the barriers imposed by physical distance, video calling changes the way the family interacts. Through technology, it becomes possible and accessible for family members to see their child and communicate with the child, relieving the homesickness and the suffering of not being able to be physically present. The family perceives the benefits that this brings to their own child as well, and this constitutes the two subcategories “seeing by video call” and “interacting with the child through video call.”

I talked to her; I told her that she didn’t need to cry [. . .] the video calls were so good that she reacted a little after we started doing them. When she called, she laughed, she joked, she talked a lot, she called me nicknames. . . she laughed. So it made her feel better, it was good for her because it occupied her during the period that she was in the hospital alone. (Roberto)

In the category “Facing barriers to reconnect with the child,” the family recognizes the demand to see the child and situation to trust the care and health status of the child. By establishing the connection through the video call, the family also reestablishes the connection with their child because the possibility of seeing helps in the process of meaning and understanding of all the interventions performed with the child, the devices, and the clinical condition, demonstrated by the subcategory “understanding the child’s condition by video call.”

I was waiting for the video call, because then I wanted to see his face, how he was doing. And then the girls would show it to us, saying, look, it’s like this, look, this is for this. This was very good for us, it made a lot of difference in our day. So, on the one hand, on the phone we supply the need to talk to the doctor, to have the information about how he was, but, on the other hand, in the video call, we also supply the need to see. It is different to see than just talk, besides it helps to understand better. (Afonso)

In this way, the family bonds. Unions, threatened and damaged by the whole experience of disconnection that hospitalization and isolation in pediatric intensive care provoke, are reestablished. Anxiety and mistrust give way to the return of family affection, care, and affection, thus, “(Re)Establishing the connection by video call.” The video call as a communication resource has been considered the condition of the phenomenon, as it allows the rapprochement of the child and the family by allowing them to see and interact, also enabling the understanding of the care provided.

Breaking Barriers and Uniting the Family

As a result, the family, previously “facing barriers to reconnect with the child,” is now resourced to face their child’s hospitalization by “breaking barriers and uniting the family” during the COVID-19 era. The benefits of (re)connecting with their child through video calling—“enjoying the benefits of video call”—give family members comfort and security.

The video call, as a condition for the (re)connection of the family with the child, also unites the family in the sense that its members can demonstrate, in tangible ways to the child, that they are close. This is encompassed in the subcategory “demonstrating closeness by video call.” When they notice that the child sees them through the video call, the family members feel united again, “bringing the family closer together.” They stop interpreting the physical absence as an abandonment and start looking at the experience as a new form of connection, “breaking barriers and uniting the family”—even if the same context exists.

It brings relief, confidence, it brings mostly trust, it brings connection, right? For sure. I think that what defines it is this word: connection. Connection with the team and with Lucas. And I talked to him every day that he was there and it was great. We kept the connection, it was very cool, it was great. It was very nice to talk to him through the tablet, I thought it was a wonderful innovation from you guys. (Mara)

If, before the possibility of video calls, families felt disconnected by the absence of information, from its use, the connection established also makes families feel welcomed by the team itself when they realize that gestures of care and affection with the child have been shown by professionals, even in the absence of the family. The barrier of mistrust and uncertainty about the quality of care is also removed, making room for moments of comfort and reassurance, demonstrated by the subcategory “trusting in the care.”

At Easter, it was a very special moment for us, you put on the bunny ears and the Easter egg, I even made a print of this moment. And there it is like a photo, a memory of that moment. Because this moment we couldn’t live with him, we weren’t there, but you didn’t let it pass unnoticed and it was very special. We will keep this image forever. (Afonso)

(The video call) It brought me closer to her because I could see that she was doing well, it gave me the certainty, to see the “hair ties” in her hair, these details make the difference, you know that she is well, and is being well taken care of. (Teresa)

The video call brings new possibilities for interaction and, by taking advantage of these new interactions, the family reclaims their autonomy and their sense of identity, realizing they are self-fulfilling the loss of these things by “Breaking barriers and uniting the family,” which is the consequence and final result of the phenomenon “Connecting to (re)connect.”

The interactionist nature of the experience makes us realize that it is not a linear process. At each moment, new elements can arise in the experience; new interactions can make the family move between the states of disconnection and reconnection with the child. However, the movement of facing barriers to reconnect with the child and the possibility of (re)establishing connection by video call are important mediators of the process that the family faces—“Connecting to (re)connect.”

Selective coding allowed the identification of the main category of the study, entitled “Connecting to (re)connect: Video calling as a resource to unite families and children in PICU in the COVID-19 era.” From it, and through the integration of these categories to the paradigmatic model of Strauss and Corbin (2008), it was possible to build an explanatory theory of the experience.

In the category “suffering the disruption in family integrity,” the family lived the whole experience of having a child admitted to a PICU. We learned that this already difficult context encountered a new and overwhelming element: the COVID-19 and its severe restrictions. “Making difficult what is already hard: The COVID-19 era” represented the cause of the family perceiving themselves “Being disconnected from your child,” due to the impossibility of being close, by the scarcity of news, and by the complete rupture of care.

Faced with these elements, the family reacts, trying to (re)connect, and continues “facing barriers to reconnect with the child,” ranging from the impossibility of receiving information in the way they would like to, to the need to see to assimilate and make sense of the information received.

When the possibility of making a video call arises, the family realizes that this communication resource allows them to get closer to the child and the care, “(Re)Establishing the connection by video call.” Each video call allows the family to establish and reestablish connection with the child, bringing comfort, security, new ways of caring, and living the family life amid the context.

Even though COVID-19 continues to “Make difficult what is already hard,” the video call brings new possibilities of interaction and, by taking advantage of these new interactions, the family regains its autonomy and sense of identity, as it realizes it is fulfilling the role it believes it has to play, “Breaking barriers and uniting the family.”

Thus, the main category “CONNECTING TO (RE)CONNECT: VIDEO CALLING AS A RESOURCE TO UNITE FAMILIES AND CHILDREN IN PICU IN THE COVID-19 ERA” integrates all categories of experience, being representative of the theory.

Discussion

In this study, we sought to understand the experiences of families who communicated with their children by video calls during the isolation imposed by COVID-19 in a PICU. This is an unprecedented study in our own context and the results shed light on important issues for the current situation, characterized not only by the pandemic but also by new technologies and their use for the promotion of integral care measures for patients and their families.

The family that has a child in pediatric intensive care experiences moments of pain, vulnerability, and anguish, resulting from the family breakdown that the context causes (Bousso & Angelo, 2001; Côa & Pettengill, 2011). In this study, we found similar results to those already demonstrated in the literature. The category “Suffering the disruption in family integrity” presents these aspects of the experience of suffering in the ICU, characterizing the context from which all other nuances of the phenomenon originate.

We found that the family—already immersed in this context of pain and vulnerability—was subjected to yet another burden of heavy suffering because of COVID-19. “Making difficult what is already hard: The COVID-19 era” presents the direct and indirect effects on family members of hospitalized children. This category ranges from the fear of something unknown worldwide, of death and its consequences for the child, as well as the indirect modifications that were imposed on routines because of the pandemic, making it difficult or even impossible to access and stay with the child. Family suffering was defined as an overlapping suffering, one more factor added to that which the family usually already experiences in the PICU.

Regardless of COVID-19, PICU patients and families experience great stress due to the severity of the disease and the environmental intensity—and the pandemic has added another layer of stress. They are at high risk for psychological problems, which have been exacerbated by the pandemic. International studies have shown that the COVID-19 pandemic acts as a sudden major environmental stressor, superimposed on a preexisting high level of psychological distress in the family. Parents may experience heightened anxiety and extreme concern for their children’s health in the pandemic era—which are even greater than those typically experienced by parents in the PICU or neonatal intensive care units (ICUs) (Balistreri et al., 2021; Erdei & Liu, 2020; Vance et al., 2021).

A study by Vance et al. (2021) evaluating the experience of parents in a neonatal ICU also corroborates the findings that the pandemic imposed an additional burden on family members, making what is already difficult even worse. Having a baby hospitalized in a neonatal ICU is already stressful; however, many parents felt that the experience of COVID-19 aggravated the stress to a high degree, potentiating the negative emotions experienced in this context.

Campbell-Yeo et al. (2022), in assessing the impact of COVID-19 restrictions on parents, found that most parents reported experiencing additional stress ranging from very distressing to the worst possible, as well as reporting that being away from their child was extremely traumatic. Thus, based on our study and the other findings, COVID-19 and its impositions brought a burden of suffering to the families of children in PICU, and the restriction of physical presence was the most impactful.

The category “Being disconnected from your child” expresses the experience of the family facing something unexpected amid all the suffering that is already being experienced. The condition of being away from the child in a critical moment leads to a whirlwind of unpleasant emotions, ranging from feelings of abandonment and guilt to the impact on the security and confidence of care—generated by the lack of news.

The decision to isolate children from their families was a response to the pandemic in a variety of settings, showing similar results regarding connection and bonding with the patient. Studies in the neonatal area reveal that the abrupt restrictions on parental presence and family participation have impaired the ability to provide child- and family-centered care. These changes affect parental stress, including anxiety, depression, and post-traumatic stress syndrome, as well as patient safety (Mahoney et al., 2020).

In response to the disconnection, families sought ways to regain connection with their child—a movement represented in our study by the category “Facing barriers to reconnect with the child.”

Mothers of patients in a study conducted by Ranu et al. (2021) in a neonatal ICU also during the pandemic stated that they wanted to be physically present to obtain comprehensive information about their babies. The mothers noted that they felt that information received by phone was sometimes incomplete and limited and this generated frustration. A recent study by Balistreri et al. (2021) also pointed out that there was a decline in the quality of communication due to reduced family interactions with the team resulting from isolation, and that this resulted in less information shared and fewer opportunities for questions.

Family absence and communication difficulties were also noted beyond the pediatric setting, as the lack of family members at the bedside in an adult ICU also negatively affected patient recovery and various psychological outcomes. It was reported that family absence also negatively influences information sharing, reducing the very quality and individuality of the care provided (Rose et al., 2021).

In this study, we found that, in addition to the aspects of verbal communication, the isolation imposed on the family emphasized the importance of seeing the setting and child to give meaning and significance to the information received. Even if just through digital means, they were able to comprehend the information given and give meaning to it. From the perspective of symbolic interactionism (Blumer, 1969), the process of meaning and resignification is built from interactions with the object and the social world; in this context, the act of seeing becomes essential in this process.

In this regard, the literature highlights that the goals of child- and family-centered care during distancing should remain the same: a focus on respecting the role of family members as care partners, collaboration between family members and the health care team, and maintaining family integrity. The pandemic requires that efforts to achieve these goals adapt to a rapidly changing culture; thus, the presence of family members must be supported, even if not physically, to achieve the goals of child- and family-centered care (Hart et al., 2020).

Thus, the possibility of making video calls between families and hospitalized children, to bring them back together and allow interactions, is an intervention with much potential. The category “(Re)Establishing the connection by video call” presents the unfolding of this intervention as a remote alternative to ensure the fundamental assumptions of a child- and family-centered approach, whereby the family can see the child, interact with them, and better understand the information they receive from the multiprofessional team—and, as already mentioned, make sense of this information.

Virtual connections have been rarely described in the literature in pediatric context before the pandemic. Yager et al. (2017) used telemedicine for remote parent participation in PICU rounds and found that parents felt positive effects in relation to safety in the care provided to children and improved communication with the team. Furthermore, the technology was used extensively during the COVID-19 pandemic and was described and encouraged in several studies—in the pediatric, neonatal, and adult settings (Balistreri et al., 2021; Erdei & Liu, 2020; Guttmann et al., 2020; Hart et al., 2020; Mahoney et al., 2020; Ranu et al., 2021; Rose et al., 2021; Vance et al., 2021). The literature is unanimous in highlighting the possibilities of (re)connection that are possible through this resource.

Our study supported this. The video call resulted in positive consequences for the family experience, which were evidenced in the category “Breaking barriers and uniting the family.” The possibility of carrying it out provided new ways for the child and the family to come closer together, allowing the families to show that they were close to their child even though the child was far away—which was of paramount importance for the recovery of an integrity that was constantly threatened by the whole context. Moreover, being able to see the child led to the feeling of also being able to trust the care provided in the absence of the family, bringing a new meaning to family absence and the need to go away.

There are several options for hospitals to allow parents to connect with their child virtually. A study that sought to survey some of these ways found that some hospitals used videoconferencing devices that include a camera, screen, speaker, and microphone. Other hospitals used web-based videoconferencing applications such as Skype, FaceTime, or Zoom. The use of Short Message Service (SMS) has also been described (Ranu et al., 2021). Measures with extremely varied costs are possible, allowing very similar results to be found.

It is possible to carry out the same intervention in different ways, depending on the physical, financial, and material resources available of each institution. In our context, every effort to make the application of video calls feasible was the result of the support of nurses who were sensitized to seek alternatives despite the scarcity of resources. Health care professionals need to be attentive to the needs of families, to be creative in finding or even developing solutions that mitigate the effects of isolation imposed by the pandemic in the most diverse scenarios, and guarantee quality support, based on care centered on the patient and the family.

A study developed in a neonatal ICU, by Guttmann et al. (2020), aimed to assess parental stress when the possibility of virtual connection was offered, reinforces the need and benefits of parents seeing their babies through this resource. In the study, the intervention of attaching cameras to the cribs was implemented, through which parents could monitor their child at any time. After this initiative, there was a statistically significant decrease in stress experienced by parents compared with those parents who did not use the bedside cameras, as the technology acted on a specific nature of the source of stress for parents—which was separation-related stress.

Thus, prior studies converge with the results of this study about the importance and benefits of video calls for the (re)establishment and maintenance of existing family connections. Parents expressed feeling “more connected” and closer to their children when seeing them “live” through this resource. The ability to see their child gave them security and decreases their anxiety (Guttmann et al., 2020; Ranu et al., 2021)

In understanding the relevance of the video call to reestablish the sense of family integrity that is constantly threatened during the hospitalization of the child in the PICU in the COVID-19 era, it was clear that seeing is essential for these families. This seeing became the great mediator of the action-interaction resignification process where the parents are able to build trust in the care provided to the child, even in their absence.

Being able to see their child promoted connection and reconnection, on an ongoing basis, and promoted resilience and security for families. However, in our study, we highlight something that has not been found in the literature to date: the value that the family attaches to such interactions for the child and themselves as well. By interviewing families of older, conscious children who could not only be seen from a distance but also see, talk to, and be entertained by the family, we learned that the child also reaps benefits from this intervention, being able to interact with his family, even at a distance, being comforted and consoled—which consequently also increased the family’s security and comfort.

It is worth mentioning the importance of professional awareness and sensitivity to mediate these virtual interactions using family nursing principals because during these video calls, as patients’ homes were entered, we saw the reality experienced by the family members and participated in moments of extreme intimacy.

Limitations

The children’s perspective was not investigated in this study. Therefore, we encourage more research to be done to understand the use of new technologies in bringing family members and patients together in different contexts and from different perspectives.

Future Research and Implications for Family Nursing Practice

There are many possible avenues of investigation—as mentioned, the perspective of the children involved, and research that seeks to understand the perspectives of professionals regarding the use of these communication technologies can provide understanding about the beliefs regarding the provision of this communication modality, as well as the barriers to implementation. We believe that the development of interventions, based on these technologies, will allow us to rigorously evaluate the effectiveness of the interventions and create a body of scientific evidence pointing to the benefits of their use.

There are many paths to take, and we recommend that we move forward in this direction, creating ways for patients and families to enjoy the benefits they reported experiencing in our study—“Connecting to (re)connect”—not only during the COVID-19 pandemic but also in any context of disruption and separation. In this sense, it is urgent that health teams work to mitigate the harmful effects caused by separation, both for the child and the family, highlighting the implementation of technologies to facilitate communication and family–child interaction—and also family–patient—recognizing that the benefits of this approach go beyond the pediatric context.

Conclusion

This study allowed us to see clearly that the hospitalization of the child in the PICU, during the era of COVID-19, caused the family great stress, suffering, and additional restrictions. These restrictions led the family to a state of disconnection with the child, due to lack of information and interactions, generating in the family members demands that involved the need for information and to be able to see the child.

In this sense, the video call emerged as an important resource, “Connecting to (re)connect.” By being able to reconnect with the child, the family also experienced the feeling of being able to trust the care that was being given to the patient.

This study presents the parents’ perspective on the use of video calling as a resource to mitigate separation during the COVID-19 era; however, further studies are suggested to understand the effects of technology from the child’s perspective.

Acknowledgments

Thank you to the Pediatric Nursing Service of the Clinical Hospital—University of Campinas—UNICAMP.

Author Biographies

Erika Sana Moraes, RN, PhD, has worked in pediatric intensive care for 10 years. Her research and clinical work is focused on child and family care and inclusion in pediatric intensive care units. Recent publications include “A Pediatric Intensive Care Checklist for Interprofessional Rounds: The R-PICniC Study” in American Journal of Critical Care (2022, with D. F. S. Alves et al.), “Equipo de apoyo a las familias de niños en Unidad de Cuidados Intensivos Pediátricos [Support Group for Families With Children in a Pediatric Intensive Care Unit]” in Revista Brasileira de Enfermagem (2022, with C. C. Silva, L. L. Melo, & A. M. C. Mendes-Castillo), and “La experiencia de los abuelos de niños hospitalizados en Unidad de Terapia Intensiva Pediátrica [The Experience of Grandparents of Children Hospitalized in Pediatric Intensive Care Unit.]” in Revista da Escola de Enfermagem da USP (2018, with A. M. C. Mendes-Castillo).

Ana Márcia Chiaradia Mendes-Castillo, RN, PhD, is an associate professor in the School of Nursing, University of Campinas, Brazil. She is the leader of the Research Group on Child, Adolescent and Family (GECAF). She is also the head of the International Committee of the Schools of Nursing. Recent publications include “Equipo de apoyo a las familias de niños en Unidad de Cuidados Intensivos Pediátricos [Support Group For Families With Children in a Pediatric Intensive Care Unit]” in Revista Brasileira de Enfermagem (2022, with E. S. Moraes, C. C. Silva, & L. L. Melo), “El papel de los abuelos de niños com cáncer Hospitalizados [The role of grandparents of children with cancer in the hospital.]” in Revista Brasileira de Enfermagem (2021, with L. B. Dias), and “La experiencia de los abuelos de niños hospitalizados en Unidad de Terapia Intensiva Pediátrica [The Experience of Grandparents of Children Hospitalized in Pediatric Intensive Care Unit]” in Revista da Escola de Enfermagem da USP (2008, with E. S. Moraes).

Footnotes

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD: Erika Sana Moraes Inline graphichttps://orcid.org/0000-0002-3963-9683

References

  1. Balistreri K. A., Lim P. S., Tager J. B., Davies W. H., Karst J. S., Scanlon M. C., Rothschild C. B. (2021). It has added another layer of stress: COVID-19’s impact in the PICU. Hospital Pediatrics, 11(10), e226–e234. 10.1542/hpeds.2021-005902 [DOI] [PubMed] [Google Scholar]
  2. Blumer H. (1969). Symbolic interactionism: Perspective and method. University of California Press. [Google Scholar]
  3. Bousso R. S., Angelo M. (2001). Buscando preservar a integridade da unidade familiar: A família vivendo a experiência de ter um filho na UTI. [Trying to preserve the integrity of the family unit: The family living with the experience of having a child in the pediatric Intensive Care Unit.]. Revista da Escola de Enfermagem da USP, 35(2), 172–179. 10.1590/S0080-62342001000200012 [DOI] [PubMed] [Google Scholar]
  4. Campbell-Yeo M., Dol J., McCulloch H., Hughes B., Hundert A., Bacchini F., Whitehead L., Afifi J., Alcock L., Bishop T., Dorling J., Earle R., Elliott Rose A., Inglis D., Leighton C., MacRae G., Melanson A., Simpson C. D., Smit M. (2022). The impact of parental presence restrictions on Canadian parents in the NICU during COVID-19: A national survey. Journal of Family Nursing, 29(1), 18–27. 10.1177/10748407221114326 [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Carlucci M., Carpagnano L. F., Dalfino L., Grasso S., Migliore G. (2020). Stand by me 2.0. visits by family members at COVID-19 time. Acta Bio-Medica, 91(2), 71–74. 10.23750/abm.v91i2.9569 [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Cavalcante J. R., Cardoso-dos-Santos A. C., Bremm J. M., Lobo A. P., Macário E. M., Oliveira W. K., França G. V. A. (2020). COVID-19 no Brasil: Evolução da epidemia até a semana epidemiológica 20 de 2020 [COVID-19 in Brazil: Evolution of the epidemic up to epidemiological week 20 of 2020]. Revista Epidemiologia e Serviços de Saúde, 29(4), 1–13. 10.5123/S1679-49742020000400010 [DOI] [PubMed] [Google Scholar]
  7. Côa T. F., Pettengill M. A. M. (2011). A experiência de vulnerabilidade da família da criança hospitalizada em unidade de cuidados intensivos pediátricos [The experience of vulnerability of childen hospitalized in a pediatric intensive care unit]. Revista da Escola de Enfermagem da USP, 45(4), 825–832. 10.1590/S0080-62342011000400005 [DOI] [PubMed] [Google Scholar]
  8. Erdei C., Liu C. H. (2020). The downstream effects of COVID-19: A call for supporting family wellbeing in the NICU. Journal of Perinatology, 40(9), 1283–1285. 10.1038/s41372-020-0745-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
  9. Gruppo di Lavoro Intersocietario “Comunicovid” (Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva [SIAARTI], Associazione Nazionale Infermieri di Area Critica [ANIARTI], Società Italiana di Medicina di Emergenza e Urgenza [SIMEU], & Società Italiana di Cure Palliative [SICP]). (2020). Come comunicare con i familiari dei pazienti in completo isolamento durante la pandemia da SARS-CoV-2 [How to communicate with your family in complete isolation during the SARS-CoV-2 pandemic]. Recenti Progressi in Medicina, 111(6), 357–367. 10.1701/3394.33757 [DOI] [PubMed] [Google Scholar]
  10. Guttmann K., Patterson C., Haines T., Hoffman C., Masten M., Lorch S., Chuo J. (2020). Parent stress in relation to use of bedside telehealth, an initiative to improve family-centeredness of care in the neonatal intensive care unit. Journal of Patient Experience, 7(6), 1378–1383. 10.1177/2374373520950927 [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Hagstrom S. (2017). Family stress in pediatric critical care. Journal of Pediatric Nursing, 32, 32–40. 10.1016/j.pedn.2016.10.007 [DOI] [PubMed] [Google Scholar]
  12. Hart J. L., Turnbull A. E., Oppenheim I. M., Courtright K. R. (2020). Family-centered care during the COVID-19 era. Journal of Pain and Symptom Management, 60(2), e93–e97. 10.1016/j.jpainsymman.2020.04.017 [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Hauser J. M. (2020). Walls. The Hastings Center Report, 50(3), 12–13. 10.1002/hast.1121 [DOI] [PubMed] [Google Scholar]
  14. Hill C., Knafl K. A., Santacroce S. J. (2018). Family-centered care from the perspective of parents of children cared for in a pediatric intensive care unit: An integrative review. Journal of Pediatric Nursing, 41, 22–33. 10.1016/j.pedn.2017.11.007 [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Kuo D. Z., Houtrow A. J., Arango P., Kuhlthau K. A., Simmons J. M., Neff J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. 10.1007/s10995-011-0751-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Mahoney A. D., White R. D., Velasquez A., Barrett T. S., Clark R. H., Ahmad K. A. (2020). Impact of restrictions on parental presence in neonatal intensive care units related to coronavirus disease 2019. Journal of Perinatology, 40(Suppl. 1), 36–46. 10.1038/s41372-020-0753-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Ministério da Saúde [Ministry of Health]. (2023). Coronavirus panel. https://covid.saude.gov.br/
  18. Moraes E. S., Mendes-Castillo A. M. C. (2020). Children isolated from their families in the PICU: From anguish to a glimpse of new possibilities. Pediatric Intensive Care Nursing, 21, 11–13. https://www.mcgill.ca/picn/files/picn/2020.picn_.v1-2_1.pdf [Google Scholar]
  19. Ranu J., Sauers-Ford H., Hoffman K. (2021). Engaging and supporting families in the neonatal intensive care unit with telehealth platforms. Seminars in Perinatology, 45(5), 151426. 10.1016/j.semperi.2021.151426 [DOI] [PubMed] [Google Scholar]
  20. Rose L., Yu L., Casey J., Cook A., Metaxa V., Pattison N., Rafferty A. M., Ramsay P., Saha S., Xyrichis A., Meyer J. (2021). Communication and virtual visiting for families of patients in intensive care during the COVID-19 pandemic: A UK National Survey. Annals of the American Thoracic Society, 18(10), 1685–1692. 10.1513/AnnalsATS.202012-1500OC [DOI] [PMC free article] [PubMed] [Google Scholar]
  21. Sonis J. D., Kennedy M., Aaronson E. L., Baugh J. J., Raja A. S., Yun B. J., White B. A. (2020). Humanism in the age of COVID-19: Renewing focus on communication and compassion. The Western Journal of Emergency Medicine, 21(3), 499–502. 10.5811/westjem.2020.4.47596 [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Souza T. H., Nadal J. A., Nogueira R. J. N., Pereira R. M., Brandão M. B. (2020). Clinical manifestations of children with COVID-19: A systematic review. Pediatric Pulmonology, 55(8), 1892–1899. 10.1002/ppul.24885 [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Strauss A., Corbin J. (2008). Pesquisa qualitativa: técnicas e procedimentos para o desenvolvimento da teoria fundamentada (2a. ed.) [Basics of qualitative research (2nd ed).]. Artmed. [Google Scholar]
  24. Vance A. J., Malin K. J., Miller J., Shuman C. J., Moore T. A., Benjamin A. (2021). Parents’ pandemic NICU experience in the United States: A qualitative study. BMC Pediatrics, 21, Article 558. 10.1186/s12887-021-03028-w [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. World Health Organization [WHO]. (2020). Coronavirus disease 2019 (COVID-19): Situation report–64. https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200324-sitrep-64-covid-19.pdf
  26. Yager P. H., Clark M., Cummings B. M., Noviski N. (2017). Parent participation in pediatric intensive care unit rounds via telemedicine: Feasibility and impact. The Journal of Pediatrics, 185, 181–186. 10.1016/j.jpeds.2017.02.054 [DOI] [PubMed] [Google Scholar]

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