¹Evelyn Braz de Araujo

²Danielle Bonotto Cabral Reis

³Adriana Duarte Rocha

⁴Ana Beatriz Souza Machado

¹ORCID: https://orcid.org/0000-0002-5960-1578

²ORCID: https://orcid.org/0000-0003-0180-082X

³ORCID: https://orcid.org/0000-0002-0678-581X

⁴ORCID: https://orcid.org/0000-0003-1179-3483

Autor Correspondente:

Adriana Duarte Rocha

Endereço: Avenida Rui Barbosa, 716 – Bloco C – sala 4 – Flamengo – Rio de Janeiro - Brasil

Fone: +55(21) 25541733

E-mail: rochachirol@gmail.com

ABSTRACT

Objective: To identify the doubts of parents regarding the care of their babies in the NICU in the process of hospitalization and hospital discharge. Methodology: descriptive study and qualitative approach. The research scenario was a neonatal unit of a tertiary hospital, located in the Rio de Janeiro, Brazil. The mothers and fathers of newborns admitted to the NICU, with a minimum stay of 2 weeks, and who were present in the unit, were selected, for convenience, as study participants. Data collection was performed using data obtained from the newborn's medical record and a questionnaire. Open interviews were also carried out with the parents in the first week of the newborn’s hospitalization in the NICU and in the subsequent weeks, until the week of discharge. In this research, data analysis was performed using Bardin's content analysis. Results: 10 mothers and 02 fathers of NB admitted to the NICU participated in this research. With the transcription of the interviews, seven categories emerged that dealt with the doubts that mothers and fathers had during the hospitalization process, described below: Basic Care; Breastfeeding/Feeding; Treatment; Exams/Surgeries; Disadvantages for discharge; Post-surgical care; Hospitalization time. The category with the highest number of doubts presented during the survey was Treatment (25.5%). Conclusion: It was possible to verify that the hospitalization in the NICU generates several doubts in the parents. Doubts related to the care provided to their children, about breastfeeding and feeding, about treatment, among others

Keywords: Patient Discharge; Intensive Care Units Neonatal; Newborn; Neonatal Nursing; Health Education.

RESUMEN

Objetivo: Identificar las dudas de los padres sobre el cuidado de sus hijos en la UCIN en proceso de hospitalización y alta hospitalaria. Metodología: estudio descriptivo y enfoque cualitativo. El escenario de la investigación fue una unidad neonatal de un hospital de tercer nivel, ubicado en el Estado de Río de Janeiro. Las madres y padres de recién nacidos ingresados en la UCIN, con estancia mínima de 2 semanas, y que estuvieran presentes en la unidad, fueron seleccionados, por conveniencia, como participantes del estudio. La recolección de datos se realizó a partir de los datos obtenidos de la historia clínica del recién nacido y de un cuestionario. También se realizaron entrevistas abiertas con los padres en la primera semana de internación del RN en la UCIN y en las semanas posteriores, hasta la semana del alta. En esta investigación, el análisis de datos se realizó mediante el análisis de contenido de Bardin. Resultados: Participaron de esta investigación 10 madres y 02 padres de RN ingresados en la UCIN. Con la transcripción de las entrevistas, surgieron siete categorías que abordaban las dudas que las madres y los padres tenían durante el proceso de hospitalización, descritas a continuación: Atención Básica; Lactancia materna/Alimentación; Tratamiento; Exámenes/Cirugías; Desventajas para la descarga; Atención posquirúrgica; Tiempo de hospitalización. La categoría con mayor número de dudas presentadas durante la encuesta fue Tratamiento (25,5%). Conclusión: Se pudo verificar que la internación en la UCIN genera varias dudas en los padres. Dudas relacionadas con la atención brindada a sus hijos, sobre la lactancia y alimentación, sobre el tratamiento, entre otros.

Palabras clave: Alta del Paciente; Unidad de Cuidado Intensivo Neonatal; Recién Nacido; Enfermería Neonatal; Educación para la Salud.

RESUMO

Objetivo: Identificar as dúvidas dos pais frente aos cuidados dos seus filhos na UTIN no processo de internação e alta hospitalar. Metodologia: estudo de natureza descritiva e abordagem qualitativa. O cenário da pesquisa foi uma unidade neonatal de um hospital terciário, localizado no Estado do Rio de Janeiro. Foram selecionadas, por conveniência, como participantes do estudo as mães e pais dos recém-nascidos internados na UTIN, com internação mínima de 2 semanas, e que estivessem presentes na unidade. A coleta de dados foi realizada através de dados obtidos no prontuário do recém-nascido e um questionário. Foram realizadas também entrevistas abertas com os pais na primeira semana de internação do RN na UTIN e nas semanas subsequentes, até a semana da alta. Nesta pesquisa, a análise de dados foi feita por meio da análise de conteúdo de Bardin. Resultados: Participaram desta pesquisa 10 mães e 02 pais de RN internados na UTIN. Com a transcrição das entrevistas, emergiram sete categorias que se tratavam das dúvidas que as mães e os pais apresentavam durante o processo de internação, descritas a seguir: Cuidados Básicos; Amamentação/Alimentação; Tratamento; Exames/Cirurgias; Impeditivos para alta; Cuidados pós-cirúrgicos; Tempo de internação. A categoria com o maior número de dúvidas apresentada durante a pesquisa foi sobre Tratamento (25.5%). Conclusão: Foi possível constatar que a internação na UTIN gera nos pais diversas dúvidas. Dúvidas essas relacionadas aos cuidados prestados aos seus filhos, sobre amamentação e alimentação, sobre o tratamento, entre outras

Palavras-chave Alta do Paciente; Unidade de Terapia Intensiva Neonatal; Recém-Nascido; Enfermagem Neonatal; Educação em Saúde.

In view of some statements, it was possible to identify some doubts of mothers about the basic care that is offered daily to newborns, especially when they are primiparous mothers.

Wow, I have doubts about everything. Because I'm a first-time mom, so I don't know anything about babies. I don't know how to change a diaper. I don't know how to hold it properly, so my doubts are basically these, how to deal with the baby, right, the first time, so for me it's all very new, that's it (M01 - 1st week)

I honestly would like to take care of her belly button. I asked about the navel because it was already dry, you know, it was already very dry (M08 - 1st week)

The quality of care offered to newborns soon after birth and in their first days of life is extremely important for their survival and also for their healthy development⁸.

These basic cares are common in the daily life of the family and the newborn, such as: breastfeeding, hygiene of the umbilical stump and in the bath, diaper changes, control of heat supply, among others, which, if performed correctly, are practices capable of to contribute to the reduction of mortality in the neonatal period⁸.

In this way, it reinforces the importance that health professionals know the context of the family they are caring for and, thus, are also aware of the existence of beliefs and values that are around the newborn, so that they can plan and help in a more adequate, with guidance and follow-up regarding care after discharge⁹.

Breastfeeding and Feeding:

When it comes to breastfeeding, there are many questions from mothers, especially when it cannot happen immediately. It can be seen from the following statement that waiting to start breastfeeding, which would be a natural process after childbirth, and this does not occur, generates a feeling of doubt in the mother, as can be seen in the following statement:

And also my doubt about breastfeeding, when will she be able to suckle directly from the breast, this part of breastfeeding that I still don't know anything, I'm completely lost (M06 - 1st week)

It is recommended that breastfeeding be encouraged even before the newborn is able to breastfeed, as milk production can be reduced due to lack of stimuli. Mothers are encouraged to milk their breasts, even if their child is currently receiving some type of formula or parenteral nutrition¹⁰.

While breastfeeding does not occur, the mother should already receive information and guidance on the correct latch and position, as well as on the difficulties that may arise during this process, and what to do to prevent or even treat them¹¹.

The following statements demonstrate that mothers have doubts and difficulties in this breastfeeding process:

Yes, even so, I have little difficulty in breastfeeding, for her to take the breast. We always have doubts about breastfeeding, especially since she is my first child [...] (M06 - 2nd week)

About breastfeeding, I'm doing well, the milk is coming out well, now he just takes the breast. Now I'm a little calmer. That's all that's missing (M09 - 2nd week)

On the other hand, some babies undergo a longer hospital stay. And the fact that they did not evolve satisfactorily with acceptance of the oral diet, the way of administering food needs to be changed with the transition from the oral route to gastrostomy, thus leading to some doubts:

I wanted to know when are they going to let me give him the diet going into the gastrostomy? I really want to do this so he can go home as soon as possible (M10 - 11th week)

Thus, in the face of new information, there is a need to learn how to handle this device necessary for feeding. The nurse's guidelines on the management of this device for feeding during hospitalization and for carrying out this care at home are essential⁸.

After adequate guidance, the speech of this same mother who had doubts about offering the diet through the gastrostoomy was remedied:

I already know how to do his diet, I already know how to do everything (M10 - 12th week)

Treatment:

The birth of a malformed baby generates frustration of a perfect birth, with negative feelings and disappointment, not only for the mother but also for the father and the whole family. It is believed that women and their families, when living such an experience, feel many doubts, uncertainties and fears¹².

Because it is an institution that also performs high-risk fetal care, many parents still receive the risk diagnosis of their child during prenatal care. And often this diagnosis will lead to a period of hospitalization in the NICU, requiring treatment, therefore, it was necessary to address this category according to the statements that were observed.

The next reports show that the mothers still had many doubts about how the treatment would be, even receiving a diagnosis of early malformation during pregnancy. Doubts that for the most part could have been clarified during the prenatal period of pregnancy:

Yeah..., I wanted to know if from the moment he puts the valve on, it is already considered hydrocephalus and what is the degree of his hydrocephalus, at first that's all (M03 - 1st week)

So… my doubts at first were related to her encephalocele, which until then we know about the situation, but we still have that doubt about what could be inside this pocket. The issue of her being tiny too, that's why she's also hospitalized, I believe, it was one of the reasons they gave me (M06 - 1st week)

Even knowing their child's fetal diagnosis, parents are never prepared to see their child hospitalized in a NICU, surrounded by devices and wires, often not even knowing the risks and benefits of treatment, so it is essential that professionals welcome parents and provide guidance on care pertinent to the treatment¹³.

Parents still have many doubts about the everyday care that is involved in the treatment of their child, such as the noise of the monitors, the use of a gastric tube that is indicated for feeding, administration of medication and gastric decompression of the newborns, doubts about the use of oxygen, either through the orotracheal tube, in the form of nasal CPAP or Oxy-Hood, also known as a tent or helmet, as seen below:

And another thing is also that I'm very worried about my son because he was wearing that helmet, he took it off and went back to the helmet, so I don't understand, I think he's worse, that's why he had to go back to the helmet and it's making me feel bad, I'm sad (M09 - 1st week)

Yeah, the first question is that probe of his that is in his nose, how long will it stay, so I wanted to know with you, that it seems from here that it bothers him, right, this probe there. They talked more with his mother about diagnosis. I also have doubts with these noises that keep beeping, what does that mean? He is fine? (P02 - 1st week)

During hospitalization, nurses must develop an effective interaction with parents, seeking to promote parents' participation in the treatment and recovery of their child's health during the hospitalization process¹³.

Exams and Surgeries:

During the hospitalization of the newborn in the NICU, it is necessary to perform several tests and, in some cases, surgery. Therefore, some doubts have arisen on this topic, and it is important to be analyzed.

The need for surgical procedures or invasive exams in the NB is a situation marked by uncertainties and the severity not yet known. As the surgical NB is more vulnerable to these therapeutic procedures, as it still has organic immaturity¹⁴.

In addition to the concern about knowing that their child will need to undergo an exam or surgery, the mothers' anguish can be seen in the narratives when they learn that the procedures have been postponed or cancelled, bringing uncertainties:

My doubts are whether the fact of this exam will really materialize, because unfortunately I already had it scheduled and it was cancelled, I already had uncertainties. So, it's... I'm unfortunately in doubt, in doubt if it's really going to be done, so my uncertainty at the moment is this, right (M02 - 2nd week)

Yes (cry). I'm very distressed with everything I'm going through, because my son was born yesterday and so far I don't have any information from the doctors, about what the result of the ECHO he did and not having this information makes me very distressed (M09 - 1st week)

There comes a time during hospitalization when parents stop being passive observers and become active participants, but for this to happen, parents needed different types of information at different stages of their child's hospitalization to feel part of the process¹³.

Therefore, when they are informed of the events during hospitalization, they are concerned with every detail, including the neonatal screening exams that every newborn must do, regardless of whether they are a risk newborn or not, as can be seen in the speech to follow:

Oh, I remembered that I'm not sure if they've done the foot test, the little ear, the little eye test, because I know she's not deaf, when something fell in the ICU she was startled by the noise, so she listens, and she stays also following my finger, so she sees (laughs) (M08 - 1st week)

When parents are informed clearly and concisely about their child's status, they become more willing to be active partners in the care of their baby. Their focus of concerns changes over time with the advancement of treatment¹³.

Impediments to discharge:

When the newborn needs to be admitted to the NICU, it is not yet known for sure how many days will be needed for discharge, in view of this, during the research the parents had doubts about what were the factors that would prevent the discharge at that moment, thus emerging this category .

My question is about the baby's discharge, what are the problems today that would imply the baby's discharge from the hospital, you know. Yeah..., among all the doubts we have about the risk of the baby, which ones would imply in his discharge or not (P01 - 1st week)

Even though the parents really want to go home, the preparation for the discharge is marked by fear mixed with joy. Leaving the safe environment of the NICU and being close to the professionals can be a great difficulty¹³.

Providing clear information on the babies' discharge process and providing a simple guideline facilitates parents' understanding, as well as helping them to understand what stage their child is in. Using terms that are accessible and appropriate to the cultural level of each family helps them to understand the information in the most appropriate way possible⁵. As can be seen in the following speech:

Then today the doctor explained his situation to me and said that it is more for him to take the breast, which is very difficult and finish his medication. And that we are released later to go home (M09 - 2nd week)

When professionals transmit the necessary information during the period of hospitalization, parents can clearly understand what is still missing for the baby's discharge, thus making it possible to have an understanding of the progress of the treatment.

Post-Surgical Care:

The diagnosis of a malformation marks the life of the parents in addition to causing great disorders in the family nucleus. However, the earlier the diagnosis, the longer the time for the family to prepare for this new moment, with new demands, better understanding the pathology that affects their child¹².

When this malformation needs to be treated with a surgical procedure, the mother experiences an adaptation to a maternity that is completely different from what was expected, resulting in meetings and disagreements with her child, which consequently generates many doubts that cross the family¹⁴.

The newborn who needs surgery is a physiologically and psychically vulnerable baby. This newborn needs technologies and hospital care, however, it also needs maternal care, as no newborn survives without maternal care. However, in the case of surgical newborns, maternal care is initially replaced by intensive care in the NICU environment¹⁴.

In some cases, after surgery, it is necessary for the mother to perform some technical care to continue the treatment of her child while still in the hospital or after discharge. Which can lead to doubts about how to perform these more technical cares, as in the following reports:

It's just in relation to how to proceed with the scar from the surgery, with the stitches, is there any specific soap to use, if you need to apply some ointment to help it heal, or just wash with soap and water, just in relation to the healing of stitches, both on the head and on the tummy (M05 - 2nd week)

I would suddenly like to bandage her injury, but I don't know if I can [...] (M08 - 1st week)

Actually, I was wondering if I can change the side attachment of his GTT? (M10 - 10th week)

Therefore, nursing should be a facilitating agent for the family, especially for mothers, in order to bring mother and child together early from the NICU, since they have negative and confused feelings that can be translated as frustrations, anxieties, fears and doubts¹⁵.

Lenght of stay:

Hospitalization in the NICU is not something desired by parents, when it is necessary for the baby to be hospitalized, parents want this hospitalization time to be as fast as possible, and doubts often arise as to how long it will be necessary for their child to remain hospitalized, therefore, it is important to discuss this matter.

Parents, when faced with the hospitalization of their child in the NICU, mostly feel incapable and powerless because they cannot immediately take care of their child as planned during pregnancy. It is at this moment that the NICU team must help parents to face this difficult phase¹⁶.

The NICU environment puts parents in contact with their child's health difficulties, such as the pain caused by the procedures and even the possibility of death, but they also experience the possibility of healing and good evolution of the NB, which results in different feelings that can lead to the presence of symptoms of anxiety, stress and depression that can harm the bond with the baby¹⁷.

This can be seen from the mother's account below of her feelings during her daughter's hospitalization:

Yeah, so... the doubts remain practically the same in relation to hospitalization, because we get anxious, how long will she stay here, right, and that actually makes me very nervous, I'm fine, it's confused, because we stay in the hospital. doubt if it will take time, if not and it is messing with my psychology a lot. More nervousness, a mixture of her desire to go home, doubts about her time here, if it will take a long time, if not (M06 - 2nd week)

Some studies also point out that parents of babies hospitalized in the NICU find it very difficult to get close to their child because of the amount of wires and devices around the baby, which impairs the construction of the affective bond¹⁸.

When this time of hospitalization in the NICU is prolonged due to the emergence of other diagnoses during hospitalization, the feeling seen in the parents at that moment is often of fatigue, disappointment and anguish, as can be seen in the report below:

Man, I can't believe that he's reached saturation, everything was fine for his high on Thursday, I don't believe that. And now? They will want him to stay in the hospital for more days. The doctors will no longer discharge him because of this. Will it be? Will they give me a higher rating for this drop-in saturation? (M10 - 14th week)

In a NICU, the nursing team, in addition to its responsibilities with the newborn, also has a commitment to the parents, and many tasks are listed in the studies as fundamental to be carried out with the family during the hospitalization process, such as: accompanying them on the first visits the NICU, clarify the newborns’ situation, answer questions, answering questions, provide emotional support with qualified listening, encourage visits and touch, include them in care, communicate about the treatment and procedures performed¹³.

In many cases, parents end up seeing themselves as spectators of their child's care and, because they are so overloaded with this whole situation, they may not know how to ask the health team for information and thus lead to confused and negative feelings¹³.

Therefore, effective communication and interaction between the professional and the family are essential to understand what is happening with the baby. Even though there are these confused and negative feelings, parents feel part of the care when they are informed and encouraged by the health team to have contact with their baby, and it is at this moment that a relationship of trust is built¹³.

Generally, mothers want only a word of encouragement from health professionals, a gesture of affection and a look of attention, individually, respecting their pain and the difficult time they are going through with their child's hospitalization.

CONCLUSION

It was possible to verify that the hospitalization in the NICU generates several doubts in the parents. These doubts are related to the care provided to their children, about breastfeeding and feeding, about treatment, exams and surgeries, post-surgical care, hospitalization time and impediments to discharge.

In addition, it was observed that with the team's effective communication with the parents, it was possible to have doubts resolved during hospitalization. Since the transmission of information about the baby's health condition in a coherent and easy-to-understand way collaborates in this process.

It is essential that nurses work with parents, providing information regarding diagnosis, treatment, certain hospital behaviors and routines, promoting effective interaction through communication that alleviates tension and anxiety.

Ideally, even before doubts arise, parents still have access to prenatal care, for example, to all necessary information about the hospitalization of a newborn in the NICU.

This information given to parents during prenatal care and retrieved at the beginning of hospitalization is essential so that there are no doubts in the hospitalization and discharge process, so that parents are safe and provided with all the necessary information.

REFERENCES:

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18. Exequiel NP, Milbrath VM, Gabatz RIB, Vaz JC, Hirschmann B, Hirschmann R. Vivências da família do neonato internado em unidade de terapia intensiva: Family experiences of the neonate hospitalized in a intensive therapy unit. Rev. Enferm. Atual In Derme [Internet]. 27º de setembro de 2019 [citado 31º de maio de 2022];89(27). Disponível em: https://revistaenfermagematual.com/index.php/revista/article/view/466

Submission: 2022-05-18

Approval: 2022-06-23

Authors Contribution:

Evelyn Braz de Araújo: a) conception and/or design of the study; b) collection, analysis and interpretation of data; c) writing and/or critical review of the manuscript; d) approval of the final version to be published.

Danielle Bonotto Cabral Reis: a) conception and/or design of the study; b) analysis and interpretation of data; c) writing and/or critical review of the manuscript; d) approval of the final version to be published

Adriana Duarte Rocha: a) conception and/or design of the study; b) analysis and interpretation of data; c) writing and/or critical review of the manuscript; d) approval of the final version to be published

Ana Beatriz Souza Machado: a) conception and/or design of the study; b) writing and/or critical review of the manuscript; c) approval of the final version to be published.

PATIENT	DIAGNOSIS	LENGHT OF STAY
M01	Respiratory Discomfort, Late Premature, Hypotonia, Dysmorphic Face, and Supernumerary Finger on Left Hand	22 days (4 incomplete weeks)
M02	Bilateral Renal Malformation	17 days (3 incomplete weeks)
M03	Arnold Chiari type II, Severe ventriculomegaly and ruptured myelomeningocele	16 days (3 incomplete weeks)
M04 e P01	Asymptomatic Hypoglycemia, Small for Gestational Age (SGA), Ambiguous Genitalia, and Suspected Bone Dysplasia	9 days (2 incomplete weeks)
M05	Hydrocephalus and Macrocranium	11 days (2 incomplete weeks)
M06	SGA, Intrauterine Growth Restricted and Encephalocele	11 days (2 incomplete weeks)
M07	Respiratory Discomfort, Late premature and Exposure to Toxoplasmosis	11 days (2 incomplete weeks)
M08	Arnold Chiari type II	9 days (2 incomplete weeks)
M09	Down Syndrome associated with Interventricular Communication, Left renal pelvis dilatation, Congenital Syphilis	19 days (3 incomplete weeks)
M10 e P02	Late premature, Large for Gestational Age, Bilateral Hydronephrosis	93 days (14 incomplete weeks)

			Variables		N		%
	Gender of newborn		female		04		40.0
			male		06		60.0
	Age of respondents		22-27 years old		06		50.0
			28-33 years old		04		33.3
			34-39 years old		02		16.7
	Marital status		single		06		50.0
			maried		06		50.0
	Level of schooling		Incomplete high school		01		8.3
			Complete high school		10		83.4
			Complete higher education		01		8.3
	Previous children		Yes		06		50.0
			No		06		50.0
	Social support		Yes		12		100.0
			No		0		0
	Work activity		Yes		09		75.0
			No		03		25.0
Prenatal		Study Institution		02		20.0
		Another Institution		08		80.0

Categories	Total respondents with doubts	% by categories
Básic Care	5	13.5%
Breastfeeding/Feeding	6	16.2%
Treatment	12	32.4%
Exams/Surgeries	7	18.9%
Impediments to discharge	2	5.4%
Post surgical Care	3	8.1%
Lenght of stay	2	5.4%
Sum	37	100.0%