Follow-up care for premature children: the repercussions of the COVID-19 pandemic

Objective: to analyze elements of the follow-up care provided to premature children amidst the COVID-19 pandemic. Method: qualitative study from the perspective of philosophical hermeneutics, interpreting experiences with childcare provided at home. Twelve mothers and 14 children aged two years old were interviewed online via a text messaging application. Data were analyzed by interpreting meanings. Results: weaknesses stood out in the follow-up care provided to children such as gaps of communication, lack of guidance and delayed immunizations, while care intended to meet health demands was interrupted. Vulnerability aspects affecting child development included: social isolation measures that impeded the children from socializing with their peers, increased screen time, the manifestation of demanding behaviors and irritation and the mothers experiencing an overload of responsibilities. The elements that strengthened maternal care included the mothers being attentive to contagion, enjoying greater experience and satisfaction with the maternal role, spending more time with their children, and recognizing respiratory signs and symptoms, especially fever. Conclusion: follow-up care provided to children in stressful situations implies implementing practices that support the wellbeing of children and families, decreasing the likelihood of children being exposed to development deficits, and detecting signs and symptoms timely. The use of nursing call centers can break the invisibility of longitudinal needs and promote health education actions at home.


Introduction
The disease named COVID-19 is caused by the Coronavirus-2 of the Severe Acute Respiratory Syndrome (SARS-CoV-2), an acute and rapidly evolving respiratory disease, first described in Wuhan, China, in December 2019 (1) . Its primary signs and symptoms described thus far include dyspnea, fever, dry cough, body ache, sore throat, runny nose, vomiting, diarrhea, and skin rashes, while severe cases lead to progressive respiratory failure and require immediate ventilatory support (2)(3) .
Many people in various countries have been infected by this disease in 2020 and mortality rates range from 0.5% to 18% according to age; a greater incidence is verified among individuals aged 60+ years old and with comorbidities (4) . Susceptibility among individuals younger than 20 years of age is approximately half that among individuals over 20 years of age, suggesting that SARS-CoV-2 is twice less likely to infect children and adolescents up to the age of 19, and most of those who become infected in this age group are asymptomatic (5) .
Relatively few children under 10 years old have been diagnosed with COVID-19, representing from 1% to 5% of infected cases (6) . Additionally, physical symptoms have been less aggressive and hospitalizations less frequent in this age group (6)(7) . Nonetheless, even though the disease seems to be less severe among children, severe cases that require hospitalization are still a possibility and may progress to death, especially among children with chronic health problems (6)(7) .
Among the group of children with chronic health problems are those born prematurely, who generally experienced lengthy hospitalizations after birth, with adverse conditions accruing from a variety of disorders and interventions, which results in a greater likelihood of disabilities, infections, complications, re-hospitalizations, and changes in growth and development in the short or long terms (8)(9)(10) . Thus, monitoring these children's health is vital, and even though the occurrence of COVID-19 tends to be less frequent among children, assistance to the needs of these children may be hindered due to the pandemic, considering the social isolation measures imposed to control the spread of the coronavirus (11) .
In pandemic situations, institutional health weaknesses may become more pronounced, considering the many emerging demands requiring attention, so that health promotion and disease prevention actions end up in the background amidst the potential collapse of the health system (12) . On the other hand, the follow-up care provided to premature children needs to be structured (9) , including interventions to deal with adversities (13) and avoid fragilities that may affect parents (14) , causing problems that prevents integral health care. In this sense, this study assumes that the parental practices of mothers of children who were born prematurely have additional needs to monitor the health of their children when facing stressful situations. Hence, this study's objective is to analyze the elements concerning the follow-up care provided to children who were born prematurely amidst the COVID-19 pandemic.

Method
This qualitative study was conducted from the perspective of the philosophical hermeneutic approach (15)  The guiding question was asked first, allowing the participants to express their experiences, and then the remaining questions followed. The participants recorded audio (five contacts with audio messages that lasted between 5 and 10 minutes) and texted messages (22 contacts, between 3 and 25 messages).
Four participants exchanged messages for three days and the messages of eight participants were distributed in two days. The text and audio messages were later transcribed verbatim and made available online for the participants to approve their content.
Data analysis included reading the empirical material more than once to interpret the meanings, which enabled a broad view of the whole in line with the analysis of its particularities, focusing on experiences that concerned the follow-up care provided to the children amidst the COVID-19 pandemic, seeking to understand and explore meanings (17) . Therefore, data analysis consisted of a comprehensive reading of the material, developing a structure of analysis, and searching for broader meanings (17) . The study was approved by the Institutional Review Board following guidelines for research involving human subjects (Opinion report 4.051.005). To ensure that the participants' identities remained confidential, they were identified with the letter P followed by a number (P1 to P12).

Results
The premature children were born with a gestational age between 30 and 35 weeks and remained hospitalized from 5 to 58 days after birth. The children's age ranged from 2 years and 7 months to 2 years and 10 months. The mothers reported that family life configured a concern due to fear that their children, who they considered to be fragile, would be contaminated: I'm Additionally, the mothers reported concerns related to other health problems their children may experience, considering their fragility due to the premature birth.
They do not receive the assistance they need though, considering that the follow-up services were suspended due to the pandemic. My greatest concern is with his health, you know? If he gets sick, with some problem other than the COVID-19. I'm worried that he won't get assistance because the public health system is already bad, now is even worse. To care for small children with dedication and patience has not been an easy task for these mothers,  With the emergence of SARS-CoV-2, the mothers found out that the follow-up care provided to the children in the PHC services had been temporarily discontinued.

Up to one year old, I used to take them to the Child Nutrition
Center, but then I stopped because it was difficult for me, too far away from home, and with two children [twins]. After that, I started taking them to the health unit, but not anymore (P3); In addition to personal difficulties to maintain the follow-up visits, the mothers also reported that the support provided by the health workers amidst the COVID-19 pandemic was poor and had been interrupted. In this study, among the children who were classified as having special health needs (CSHCN), one child had brain damage and requires specialized monitoring, and another has a chronic respiratory problem and, for this   overload of responsibilities that weaken the care provided to the child, home and family (20) .
The mothers reported practices intended to promote the development of their children, however, using screen time to keep the children busy, whenever they are stressed or throw a tantrum, or to allow the mothers to do household chores, may be dysfunctional in developmental terms. The electronic media is seen as a tool to support caregivers, allowing them more time to perform household tasks or take care of themselves, or just to keep the children busy and entertained (21)(22) . The literature shows the need to provide guidance though, explaining in detail how the exposure of children to various electronic devices and increased screen time is a source of concern (23) .
The mothers consider that the effects of social distancing on the children's development are permeated by the notion that the pandemic is temporary. They consider the fact the children cannot socialize with their peers as negative but reported positive prospects for the children's development. These results suggest that they are capable to face adversities and adapt to the current context, though sometimes they are realistic and sometimes optimistic.

Countless socioenvironmental factors may influence
the development of two-year-old premature children.
Being deprived of playing and participating in group activities may lead to complications in the short and long term (24) . In these circumstances, empathy and Prematurity is a factor that predicts that the mothers will be committed to the care provided at home, with implications that may affect mother-baby attachment and child development (18) . When parental practices are affected by concerns such as the COVID-19 pandemic, caregivers, especially mothers, may become more susceptible to stressful factors, with a strong connection between perceived and physiological stress (19) . At these times, interactions are affected and interventions need to be implemented at home to strengthen the motivation and the relationship within the families (18) , considering that changes in the family and social context lead to an www.eerp.usp.br/rlae 7 Silva RMM, Pancieri L, Zilly A, Spohr FA, Fonseca LMM, Mello DF. peculiar needs of each child, according to each child's rhythm, times, and situations (25) .
When facing stressful experiences, even families concerned with providing care and stimuli at home to their children and keeping up positive thinking that everything will pass, there will be times in which the family will be preoccupied with other concerns, such as the economic impact caused by the pandemic, considering the need to provide for the family's subsistence and to provide additional care the children may require. Note that the Foz do Iguaçu's main economic activity is tourism, which directly or indirectly contributes to the families' income (26) , and the tourism sector was severely affected by the pandemic worldwide.
The perception of child development may become circumstantial, with the possibility of increasing parental stress, negatively reflecting on care, and increasing intra-family vulnerability (27) .
Regarding the children's follow-up care, the mothers' reports reveal weaknesses such as the abrupt interruption of health care services and monitoring, suggesting that performing an active search through home visits and/ or providing support via telephone are important tools that can be used in the health field, but which the PHC service did not adopt.
The support provided by health workers to families with premature children is essential to promote health and prevent diseases (28)(29) , as well as to reinforce measures to control the spread of COVID-19 (5,7) . A study conducted in the same context addressed here reports that there are important vulnerabilities in the continuity of care provided to premature children, showing a deep disconnection between PHC, hospital-based and specialized services (28) .
Gaps in the follow-up care of premature children with lengthy hospitalizations are a source of concern in the face of the pandemic, which make it even more challenging to promote health and prevent diseases, considering the previously existing difficulties faced in the public health system, now overburdened, hindering the care provided to children.
Additionally, the vulnerability of children due to prematurity, linked to morbidities and mortality, complications, and iatrogenic problems from the time of hospitalization (28) , may lead children with special health needs to experience new care needs (30) . The mothers report that the need of their children for healthcare assistance in the pandemic context and the health services' inability to provide follow-up care is very apparent in the current context.
The mothers recognize the vulnerability of their children due to the fact they were born prematurely and are vigilant for signs of complications already identified in another study (10) , which are similar to the reports concerning flu symptoms and fever. Regarding COVID-19 symptoms, the participants are attentive and concerned with the risk of contagion. Even though the number of children infected with COVID-19 has been small thus far, children are vulnerable to the infection (7) , which justifies the need to improve guidance and reinforce control measures.
The COVID-19 pandemic is a severe disease considered a public health emergency worldwide. It has led health facilities to reorganize and redirect services and transformed the routine of families, with severe implications for human development and behavior. This context is permeated by fear, uncertainties, and challenges, indicating that the families need to receive support to promote parental care and keep positive attitudes with their children at home (31) .
In this sense, the social isolation measures may be seen as a promising opportunity for the families to construct sustainable relationships, to reserve time to interact with their children, find out what their children like, and do things together. It is also a valuable opportunity to dialogue, be affectionate, and show mutual importance, promoting good child development (31) .
Therefore, interventions during the children's first years of life are essential, benefiting integral health (32) , minimizing vulnerabilities, and expanding inter-subjective experiences, based on the notion that experiences include interactions and attention is paid to new and different possibilities (15) .
Note that diseases with complex transmission patterns, including environmental, social, economic, or unknown determinants, are considered difficult to control (33) , with implications for long-term treatment and preventive measures, demanding the same surveillance required by communicable diseases (34) .
It is worth noting that the Brazilian Ministry of Health suggested, within the pandemic context, to temporarily suspend elective appointments for premature asymptomatic babies in the hospitals' outpatient follow-up clinic (35) . The recommendation was to keep elective followup visits in the PHC services, considering that these visits are an opportunity to implement routine immunization,