Alta hospitalar do recém-nascido prematuro : experiência do pai Hospital discharge of premature newborns : the father ’ s experience

Objective: To describe the father’s experience with his premature child discharge of the Neonatal Intensive-Care Unit and to point out interventions to promote this experience. Method: Qualitative research with eight fathers, adopting the Symbolic Interactionism as theoretical reference and thematic narrative research as methodological frame. Results: The analysis of data has allowed us to describe the experience of the father from three thematic units: “fatherhood boundaries”, “high responsibility for the child” and “social network and support”. Conclusion: The father feels insecure with the idea of taking care of his child at home because of the lack of professional support and the initial contact with the child in the Neonatal Intensive-Care Unit.


INTRODUCTION
Premature birth (birth with gestational age fewer than 36 weeks and six days) is among the most prevalent causes of hospitalization in Neonatal Intensive-Care Units (NICU) in Brazil (1) .According to the data of the World Health Organization (WHO), Brazil occupies the 10 th position in absolute numbers for premature births, with 279,300 births per year, corresponding to 9.2% of premature births in the country (2) .
In the NICU, the father experiences contact and interaction restrictions with his child (3) , which may possibly compromise the affective ties between them (4) .The premature birth of the child and the need to go to the NICU are experienced by the father as a shock, bringing sadness (5) , insecurity (6) , and uncertainties (7) regarding the child's health, and the sensation of not feeling like a real father (6) .The lack of support of the father's needs contributes to the emergence of the feelings aforementioned.
From the father's point of view, the hospital discharge of the child is a time of great joy and relief (8) , because it represents the improvement in the clinical condition of the baby (9) and strengthens his role as a real father (10) .However, it is a period that requires adjustments, brings insecurities and demands decision makings concerning the child's care (8) .In this context, the father figure tends to be little considered, since his participation in the gestational process and in the NICU was limited (10) , and the usual mother's behavior is to take over the child's care as the center of her life (11) .
In this sense, considering that most studies explore the maternal perspective, this study aims to describe the experience of the father who has his premature child discharged from the Neonatal Intensive-Care Unit, pointing out interventions to promote this moment.

METHOD
Theoretical-methodological reference: symbolic interactionism and narrative inquiry Qualitative research that aims to understand the father's experience in the moment that his preterm child is discharged from the NICU.Our focus of study directed the choice for Symbolic Interactionism (SI) and narrative inquiry as theoretical and methodological reference, respectively.
The SI approaches the human behaviour by considering social interactions and the meanings that emerge from it (12) .Understands the person as an agent of their own experience and states that social actions result from interactions.It is possible to infer that the father's experience of seeing his child being discharged from the NICU includes, among others, meanings associated with his role as a father, the preterm child, the discharge from the UTIN, and with himself as a person.These meanings determine his decision-makings and actions when at home with the child.
To understand the story lived, making use of narrative inquiry has proved to be interesting for conceiving that the narrator selects central facts and events to the reconstruction of this story (13) .In other words, the significant components in the narrative structure are selected to better report the experience (13) .

Research location and subjects
We developed the research in a municipality of the countryside of the state of São Paulo, with approximately 238,000 inhabitants, predominantly residents of the urban area (14) .In 2010, such municipality presented municipal human development index of 0.805 and live births rate of 2,831 (14) .The city has three NICU's, despite only one of them offering specialized services in the field of premature care, place where we contacted the subjects of this research.
This NICU is reference in the micro-region (which includes nine peripheral municipalities) and is located in a philanthropic hospital with capacity for 10 beds.The targeted institution does not adopt the national recommendations of humanization in the care of prematures.For mothers, the access to the NICU space during the morning period is allowed, while for fathers and other family members only visits of half an hour, in a fixed schedule, during the afternoon and evening are allowed.
The team of professionals of this site comprises nurses, nursing technicians, doctors, and physiotherapists.As for the ratio of nursing staff per bed, the NICU has a nurse for every 10 beds and a nursing technician for every 3 beds.
Eight fathers (men) of premature children recently discharged from this NICU participated of this research.All of them attended the specialized services of the municipality mentioned, service that helped us by locating the fathers under this research and presenting them to our study.We adopted the following inclusion criterion: to be the father of a child from 24 to 34 weeks of gestational age with no congenital or genetic morbidities.The exclusion criteria was: the father's commitment to report understandable narratives.

Data collection
The empirical material was obtained by a semi-structured interview triggered by the question: "How it was for you to know that (name of the premature child) would be discharged from the NICU?".After the initial collocations, other questions were asked to explore this phenomenon more deeply: "What did you think of that?", "Did you have any concerns?","What kind of concerns came into your mind?", "How did you participate in the preparation of (name of the premature child)'s discharge?","What did you use to think about taking care of your child at home?", "How are you coping with this today?".The intention of using these questions was to reach a more deep understanding of the father's experience of seeing his premature child being discharged from the NICU by considering aspects such as: concepts, beliefs, and strategies used by the father; bonds, partnerships and support resources; difficulties, voids, among other elements that may constitute his experience.
All fathers were interviewed only once at their own home.Data collection only began after the approval by a local Research Ethics Committee.
To ensure the anonymity of the interviewed, all statements used here are identified by the letter "F" (father) followed by an arabic number to indicate the subjects' order of entry into the study.For example, F2 is the acronym used for the second father interviewed in the study.

Data analysis
All interviews were recorded, transcribed, and subjected to analysis by the method of narrative inquiry, from a holistic approach with emphasis on content.The analytical procedures comprise: (1) reviewing texts derived from interviews to understand the phenomenon and identify the focus of the story; (2) reviewing once again to select terms and passages that allow us to extract the structural contents to reconstruct the story; (3) interpretative and inductive analysis of the material assigned in the previous step to reconstruct a narrative by using themes (13) .

RESULTS
The eight interviewed fathers (men) had a stable marital relationship, resided with the mothers of their prematurely born children, and were between the ages of 18 and 42 years.As for their education level, two of them had some elementary school, five had completed elementary school, and one had a college degree.Regarding the number of children they had, two of them had two other children, two had four children, one of them had more three children and the rest of them had only the premature child.The gestational age of the newborns at birth ranged between 29 and 34 weeks, with period of hospitalization in the NICU between two and eight weeks.
The analysis of the narratives allowed us to describe the experience of these fathers from three thematic units: "fatherhood boundaries", "high responsibility for the child" and "social network and support".

Thematic unit: Fatherhood boundaries
During the child's stay in the NICU, fathers wish to exert their fatherhood, their first need being to understand the child's situation.However, the processes experienced in the NICU did not help them with it, especially by not offering specific and detailed information on the child's situation, which is due to problems concerning information consistency.Because of that, the trust on professionals from the NICU gets shaken and promotes concerns about the restricted access of the father to the unit.The feeling of not only being physically distant, but also far from getting information is considered the reason for the misunderstanding of the situation and for the insecurities and boundaries concerning fatherhood.The context of the NICU is pointed out as the biggest difficulty faced by the subjects to exert their fatherhood.

I wish I had taken more care of him, because I think the father could also have the option to stay. But I could only stay for very little time, I could only stay for two days, because only him was hospitalized at the time. During these two days they taught me how to take care of him, but it was not enough to get some practice. And each one of them teaches the same thing in different ways. (F02)
It's tough, isn't it?To know that he is your son and not even being able to touch him.Having to wait for the other's order or authorization to hold your son.[...] Yes, the ICU is a barrier, the biggest barrier for the father.(F08) Moved by the desire of physical proximity and the assumption of being the father's role to monitor the development of the child, fathers sought to intensify their presence near their children when they were still in the NICU.To this end, they tried to negotiate with the health team, once the rules of the unit restricted their right to access and stay close to their children.In the few contacts with the health team of the NICU, they could notice the employees who were more permissive to the father's presence, thus negotiating differentiated entries with them.In this context, some of them stopped visiting their children in the days when health professionals that showed explicit restriction to their presence were present.
For starters, in the NICU there is a big door made of glass that they don't let us pass through.See through the glass!So, as I became friends with some ladies (nursing technicians) there, then they used to let me see my child, you know?I tried to win their confidence, because friendship is everything and I did not interrupt them during their service.But I also did not see anything wrong with picking up the babies.After I won their confidence, that was it, I felt more comfortable about it.I used to stay there watching the babies, you know?I only used to go to the NICU when these ladies were there too.I wouldn't miss these days for nothing, since I stopped going there in the days the ladies (the nursing team) did not let me see my child.(F04) The fathers felt powerless seeing their children's situation, and also when they noted the unit's lack of care.Having this in mind, some of the subjects avoided the hospital because of their struggle in dealing with all the suffering as fathers.They claim the context inside the NICU helped promoting a feeling of distance from their own children.By its turn, the father figure had fears and anxieties concerning his child's care at home and thoughts on how to exert his fatherhood.

Some of them were harsh with the baby. They took him by only one hand ... I used to get really annoyed. It was tough!
We couldn't even hold him, touch him, not even cuddle him.Only after two and a half months we held him for the first time.And then, when we held him, it was strange, because he was too small.It was so scary.[...] while he was in the ICU it was very hard to see him in that way, full of tubes, being treated with saline solution, with neddle marks on the hand, PICC.And we couldn't stay there with him, only during the visiting time.But I also didn't want to see anything.(F02) You stay apart from the baby for all this time and then it is weird to take care of him at home.You have no idea of how to take care of him (he stops to consider it), how to be a father (he laughs).(F05) Other factors that limited the possibility of being present in the NICU with the child were the need to go to work and to take care of their other small children.They have the need to articulate and negotiate the visiting schedules with the care of their other children and their jobs.However, considering NICU unsupportive position, the fathers started to question if they really should try to negotiate their presence since when they were there they were not allowed to have a more intimate contact with their children.

It's really annoying. It's annoying and it's not at the same time because it's something that does not only depend on my will. I had to change my work schedule, and then I had to pay
the working hours l owed afterwards.It was really annoying, I wanted to be with him all the time.I could only stay by the door.To go there just to stay by the door and have to go through all this that I have already told you and not even being able to see your son it's really annoying.(F07) This month he stayed there was really hard for me and I was here with my three girls, taking care of them, and working.

So my mother and my sisters came to help me out [...] All this effort that I told you for very little time inside. (F06)
Thematic unit: Hospital discharge: Responsibility for the child Above all, the discharge was seem by fathers as an opportunity to get closer to the child physically.It represents their children's victory, puts the family back together and allows for fathers the possibility of exerting their fatherhood.It brings the sense of accountability together with the will of ensuring the best for the child.It determines the father's efforts of getting closer to their children under feelings of joy, peace, and great responsibility.
But when I got the news that I wouldn't need to see him inside the incubator anymore, with saline solution running through the tubes, with a catheter in his mouth, I was really happy.It's something I can't explain how it's like ... to have him near us, to have the chance of cuddling him, which I imagine that might be better than the treatment that were giving to him in the hospital.I felt very happy.So, it's like ... I just can't explain it!We rooted a lot for him to be next to us.(F07) When I brought him home I felt like a father.Because the responsibility was mine now.I'm the one who will take care of him now, it is all on me.When he was there at the hospital, the responsibility was theirs, they did everything.(F02) Especially in the gestational period, fathers explained that they idealized a fatherhood somehow affected by the children's need for the NICU.However, in the face of discharge, they redefined their goals, including the ones concerning fatherhood.In this sense, the fathers' intention of supporting their partners with the children was present in the narratives, especially concerning the children's ups and downs since they were born premature.Because of this, one of the ways to which they find to ensure such care is getting a private health insurance.
We started getting ready to have a child during the gestation period.Before the birth we already started thinking, reflecting about it.[...] The period in the NICU changes everything, it's like recovering from a shock.(F05) Actually, once she got pregnant we started preparing ourselves.Then, when he came home I had to mentally prepare myself to help her.If anything happens she can call me, or if there's no other way, I ask someone else to help her.We're not just getting ready to have a child at home, we're getting ready for everything else.Soon I'm going to start paying their health insurance (for his wife and children), by now I only pay my own, so I'm going to start paying for them.(F07) At home, when experiencing the proximity to the children and ensuring their health conditions, fathers identify that they would never be ready for this, since new demands come up every day.However, they see themselves as the ones who should take responsibility for their children's health and care, having to show support towards their partners.In all reports, mothers have taken control on the care of the premature children.
For the fathers in this study, the father figure is the one that must stay aware of the quality and effectiveness of health professionals and services.When identifying assistance gaps, they need to make decisions to ensure the quality of health care.The fathers that participate in this study understand that premature children are fragile and have their own needs, which requires a specialized care.So that they believe the children's ups and downs would be better supported in the specialized attention.
Gee, I'm bringing a newborn home and the only thing my wife can do is feeding and cuddling him.And if somethings happens to him?I intend to take the child to the emergency room from my neighborhood, but I don't believe there will be a 24/7 paediatrician there, there will be only a general practitioner.Therefore we care about his health since he is so little and fragile.I was already prepared, but with time we find out more things to be prepared for, so we go after these things.It's hard to be really prepared, we prepare ourselves day-by-day.(F07)

But I was the one who asked for the retinopathy examination, because if I hadn't done so, he would have come back home and maybe would have turned blind. So if I hadn't asked them that, if I hadn't had the knowledge on this because of my friends, he wouldn't have gone through the examination and he could be blind now. Because his case was severe in this part of the eye. So we must have our eyes wide open. (F03)
With the discharge from the NICU, according to our reports, the fathers understand their responsibility for the children's care.All fathers recognized themselves as the responsibles for guaranteeing their children's health and were afraid that something bad would happen.They highlighted their need to watch out their children and reported concerns on their competence to take such role.
First-time fathers admitted having no experience, which increased their insecurity in performing this role.However, they also highlighted that this feeling got better as they experienced their children's care routine.As for fathers that had already had other children, the feeling of being inexperienced was absent, which did not help them dealing with the fears and anxieties associated with the peculiarities in the care of premature children.
ones: contact restrictions between children and other people besides their parents (assuming both father and mother are adequately sanitized), the non-exposure of children to cold temperatures, the adoption of strict habits of hygiene that include avoiding the child touches the floor.With time they tend to abandon such habits since they begin to see their babies as children that have grown up and that are now stronger.
So, our worries concerned the people who would come to visit us, you know?Not to pick him up with dirty hands.So we got more used to those little cleaning "details".After a while we started not worrying about it too much, you know?Because this would make him stronger.(F03) So, our biggest concern was keeping things in order, keeping all sanitized so that he wouldn't have any kind of problems here at home.They (professionals) gave us some information, especially for her (his wife).So, we're more concerned in following their guidance to avoid all kinds of problem here at our house.(F06)

Thematic unit: Social Network and Support
For the fathers of this study receiving frank and comprehensible information was relevant, with detailing of the real situation and evolution of their children, and stating if the children were in the process of overcoming the risk of death.This procedure met paternal yearnings and contributed to the expansion of knowledge about the situation, meant as support, showing confidence and minimizing concerns regarding medical release and the return to home.
However, insufficient emotional and informational reception prevailed.They sought in their children a resource to the confrontation, in particular when referring to the desire and hope to take their children back home.They rejoiced with evidences of improvement of their children's health condition.
I relied a lot on the professionals that were involved.On the people and on the professionals: Look, he is improving, he is not at risk anymore, he was tired and his lung is still not fully developed in order to him to breathe properly, but you can see through the machine that he was panting, but everything is going towards recovery.So with that I left very happy, relaxed, for seeing his improvement.(F07)

I said: no, but I saw that he has moved, you will see tomorrow. The other day, he began to move. It is this desire, you know? Of believing that he was going to get better, it stimulated me too. I am like that, you know? I didn't let myself falter. I always followed this thought. The hope of bringing him home, I relied on that [...] but the ICU itself discouraged us, by the way they treated us. (F03)
Getting help with house chores, with the wife and other children who remained at home, was cited by fathers as a necessity.The family, mainly represented by the mother, mother-in-law, sister, sister-in-law and daughters, represented the social support.
The support between the couple itself was very present, especially in the absence of the support of the extended family,

I already had some experience since I had an idea of how to deal with my daughter. I have always been attached to children, I used to hold them and play with them. I have a lot of nephews. By the time it didn't matter for me. Because I already had an idea of how to take care of a child, I was not scared of doing it. (F04)
After he came home I started overcoming my fear.The first time I held him was at the maternity.She needed to take a bath and there was only me there, you know?What could I do?But I stood there with him in my arms in the same way she put him so.I barely moved, I couldn't stand the pain in my arm.But this doesn't happen anymore, I give him a bath and dress him with some clean clothes.But we are scared of not knowing if we're taking care of him in the right way.We're scared of not realizing if something bad happens.(F01) Different levels of anxiety while taking care of the child after hospital discharge are associated with the information provided in the NICU.Among these, the children's size and fragility make most fathers really scared of touching and carrying their children, and even of transmitting any infections.This process starts to happen in the NICU and continues at home.
Despite not excluding the chances of complications in children's clinical conditions, the discharge from the NICU is considered a relief for all fathers.Furthermore, after hospital discharge, the father's perception go from the fear of having to deal with babies of small size to the understanding of this condition.
We looked to the other babies... our baby was big, had a healthy weight, and they (health professionals) told us we wouldn't have any problems with him, which help us to remain calm.(F05) He was very little.We didn't let him in the cold, we used to take care of him really well in the sense of preventing him from something like pneumonia, you know?We have taken care of him really well after he came home, we didn't let people that smelled like cigarettes to hold him, we had to be careful with these things.But he was really little, you know?Sometimes I think we were scared to break him.He was very fragile, you know?Very little.Which sometimes makes things even easier; It's more the fear of something wrong happening that gets in the way, but actually doing these things is a piece of cake.By doing these things, taking care of him, giving him baths, changing his diapers, I started to overcome my fear.(F03) The chances of feeling connected with the children increase as fathers take care of them and show them affection.In this sense, we noted that most fathers took the responsibility of meeting their children's needs.Among the needs seen as essential, we highlight the exposure to infections that might promote the child's return to the hospital as one of the biggest concerns, precaution suggested by the NICU and reinforced after hospital discharge.This way, among the preventive actions they usually took we highlight the following Rev Bras Enferm [Internet].2016 mar-apr;69(2):202-9.
seeking to share emotions and feelings (positive and negative) from the situation faced by the son and by them.
Support, who supported us the most, since she was hospitalized, right?My sister was the one who visited her the most, she saw her every day when I couldn't go, washed her clothes, came to get her clothes.When I could, I also got the clothes, I can do one or two things, you know?The biggest support was really my sister, she was the one who visited the most, while she was hospitalized and after the babies were born.(F04) Her mother does not interfere, nor the father, they are of no help.So I was the one who helped her (wife) and she really helped me, it was just the two of us, to this day.(F01) Religion and faith appear as resources and were effective as support for some fathers.When relying on the spiritual aspect, they reported being able to acquire tranquility, comfort and emotional force.They used this aspect in particular to ask a higher power to guide health professionals in their actions towards their children.

But we always have faith, always seeks comfort to such a moment. (F05)
Yes, I think that faith supported me.Faith, mine and hers.I'd give her strength, and she would gave me strength.There is always a superior force.We are Catholic, we go to church, always thinking that the professionals will be enlightened to take good care, to do the right thing.(F03)

DISCUSSION
Considering the narratives of fathers, this study highlighted the lack of welcoming to the fathers of preterm babies hospitalized in ICUs, reflecting in the time lived at home after the child is discharged.Dissatisfaction stood out regarding the interaction with health professionals of NICUs, influencing the exercise of paternity concerning safety for the assumption of their rightful role.
We confirmed that obtaining understandable and frank information is a right of fathers, and promotes knowledge of the situation experienced by the child, which meets their demands (15) .In line with the exploitative search of the paternal perspective, the absence of information regarding the child's health state determines, according to a study, feelings of insecurity and uncertainty and has an impact on welcoming and interaction with the health team (3) .
As well as for the fathers of the above-mentioned study, the fathers we analyzed in this study also regarded the NICU as a hostile and unwelcoming environment, attributed mainly to lack of information on the functioning of the unit and its rules (3) .The context observed by the study triggered unpleasant feelings, such as sadness, anxiety, anguish, fear, and feeling of helplessness when facing the child's situation (7) .The same happened to the fathers we analyzed here, especially when they noticed and witnessed situations of neglect and incompatibility with the expectations they held regarding the care offered by professionals to their children.Such perceptions led fathers to distance themselves from the NICU because they were unable to handle their situation.
In addition, nurses and their team were evaluated for their dexterity when performing procedures and routine tasks of the NICU.Affective aspects, as well as awareness, involvement and solidarity when caring for human beings are little used in the practice of those professionals, and their actions are replaced by rigidity, hierarchy and the regulations of the institution, favoring impersonality in the relationships of care, and making the subject a mere object of assistance (16) .
In this study, to reconcile the visiting hours established by the institution to visit their children, work and other daily responsibilities was pointed out as a major difficulty concerning the hospitalization of the child and the father's desire to stay with them.This refers to the Family-Centered Care, a philosophy of care that recognizes the family as subject of health actions.In this way, familiar comfort, respect for cultural, racial, socioeconomic and ethnic diversity specific to each family are prioritized.This allows for a joint work with the family, recovery of their strength and individuality, and promotes informational and emotional support, aspects that must integrate the action of health professionals (17) .
In addition, other studies point to the need for inclusion of the father in the dynamics of care of the NICU (11) , with the health team supporting him to promote a sense of security for the care of his child at home (18) .As a consequence, fathers tend to adopt such learnings outside of the NICU and, from his empowerment for care, the father begins to care for his child in his own way.In this study, words with positive connotations said by health professionals were cited by fathers as reassuring.
Furthermore, the possibilities of contact with the child, such as having early skin-to-skin contact and be allowed to stay with the child in the NICU, are actions listed by other studies as promoters of bond and security, and contribute to the development of the paternal role (6) .Otherwise, when this is denied, the fathers feel insecure in relation to child care at home, linking that feeling to the lack of opportunity and consent to their participation and presence in both the gestational process and in the NICU (10) , a fact confirmed in this study.Our results point out that the insecurities related to the care of the child at home are more felt by those who are experiencing fatherhood for the first time.
In addition, father has a fundamental role, as well as the mother (3) on the recovery of children born premature, in the maintenance of the family core and link (4) , being the person who cares for his wife and hospitalized child (3) , facts here confirmed.Thus, they are worthy of being welcomed into health care.
Inserted and stigmatised through an emotionally stable image (5) , the man belongs to a society that keeps him away from the actions of caring for his offspring (3) and he assigns this situation to his role of provider, that restricts opportunities for care and closeness with the child (19) .Elements related to this were identified in this study when the father assigns to himself the responsibility of ensuring the child's health.Thereby, when faced with hospital discharge, he hires a private health service for the child, while remaining vigilant to his/her health and and helping his partner.
Health professionals, family and spirituality were pointed out as coping resources, confirming the results of other studies (20)(21) .In this sense, these factors were highlighted as promoters of resilience, even though the first ones may also have such a role, especially making fathers vulnerable.

FINAL CONSIDERATIONS
The data analysis reinforces the need for investments to humanized attention to children and their family in the context of hospitalization in the NICU and beyond the theoretical recommendations.That means overcoming the conception of the child and the mother being the main subjects of care, including the father as an integral part of this attention.He is also affected by premature birth and hospitalization of the child in the NICU, in addition to still being assimilating his new parenting role.
Thus, the findings here obtained allow us to point as intervention the father's recognition while subject of professional care, since receiving support to the process of becoming a father has proven to be essential.In this sense, ensuring the physical and informational proximity to his child since the days of NICU is the right solution.The establishment of an effective interaction with health professionals supported by dialogue is highlighted as urgent.
In addition, it is important for health professionals to mediate changes in the labor legislation, given the fact that work was pointed out as an important limit to parental coping of premature birth and hospitalization of the child in the NICU.
It is also important to highlight as intervention, professional facilitation on the transposition of the belief that the care of the child rests primarily on the wife.Since reproductive planning conversations, to prenatal care, childbirth and puerperium, professionals can help with reflections on gender issues, contributing to the conquest and cession of space to the father in the care of the children.
Further studies must be performed, seeking to advances the issues approached here, especially those that deal with the health care network and welcoming of the father aiming to qualify the support and empowerment to fatherhood, which shall have repercussions on the protection to child development, mainly to those children who were hospitalized in NICUs.
Within the limitations we found, we can highlight the fact that this research was conducted in a specific scenario without incorporation of the guidelines for humanized care in Neonatology.Explore and counter how is the experience of staying in hospitals that follow humanization recommendations, with the accredited as children friendly hospitals, is another suggestion with potential to densify the phenomenon approached here.
We perceive as urgent the need for welcoming the father of children born premature in health practices, especially due to the changes articulated by gender nowadays, thus contributing to the implementation of the principles present in national policies and programs aimed at the health of children and families.

FUNDING
Fundacão de Amparo a Pesquisa do Estado de São Paulo (FAPESP) provided financial support to this study.