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RESEARCH ARTICLES

 


Relatives’ intentional action towards children in the pediatric intensive care unit


Juliana Maria Rêgo Maciel CardosoI; Benedita Maria Rêgo Deusdará RodriguesII; Sandra Teixeira de Araújo PachecoIII; Bárbara Bertolossi Marta de AraújoIV
IMaster's degree in Nursing from the Nursing Faculty at the State University of Rio de Janeiro. Nurse of the Pediatric Intensive Care Center of Federal Hospital of State Servants. Substitute teacher of Mother-Child Department of the Nursing Faculty at the State University of Rio de Janeiro. Brazil. Email: julianahfse@gmail.com
IIDoctorate in Nursing by Anna Nery Nursing School at the Federal University of Rio de Janeiro. Full Professor of Maternal-Child Department of the Nursing Faculty at the State University of Rio de Janeiro. Brazil. Email: benedesudara@gmail.com
IIIDoctorate in Nursing by Anna Nery Nursing School at the Federal University of Rio de Janeiro. Assistant Professor of Maternal-Child Department of the Nursing Faculty at the State University of Rio de Janeiro. Brazil. Email: stapacheco@yahoo.com.br
IVMaster's degree in Nursing from the Nursing Faculty at the State University of Rio de Janeiro. Assistant Professor of Maternal-Child Department of the Nursing Faculty at the State University of Rio de Janeiro. Brazil. Email: betabertolossi@gmail.com


ABSTRACT: This study aimed to learn what relatives intend when they stay with their children in the pediatric intensive care center. The survey was conducted with fourteen family members accompanying children admitted to a large federal hospital in Rio de Janeiro. The Sociological Phenomenology of Alfred Schütz was adopted as methodological support. The phenomenological interview was used to capture the discourse of the relative, whose intentional action was expressed by the following categories: being at the child’s side and the child’s improvement, recovery and cure. The results showed that their staying in the CETIP is related to the love they have for the child, as well as the need for news about the child’s clinical condition. We conclude that it is necessary that nurses perceive the family companion as essential to the care process, and as contributing to humanized care for child and family.

Keywords: Pediatric nursing; pediatric intensive care; family; humanized care.


 

INTRODUCTION


The nursing care in the pediatric intensive care center (CETIP) takes a lot of skill, dexterity and attention for the sick child. In this intensive environment circulate several professionals with specific specialties in order to provide quality assistance to the pediatric patient, that often needs, monitoring, drug infusion, ventilatory support and the use of various technological apparatus.

It is in this cold environment, surrounded by technology and intensive care that the family inserts, for the most part, with little knowledge about the used equipment, about the care provided to their  loved one, and even about the health condition of the child. Thus, it is common to the family develop insecurity feelings, fear and uncertainty about the future of their relative. The way every family face the hospitalization at CETIP is related to the family life stage, the implications of the health state that the child can unleash in families, the role of the child in this group and in the way these people are organized during hospitalization1.

In this sense, it is obvious the effort made by the majority of the families in order to reorganize or re-articular to be on daily visits to their admitted children. Many families remain in the reception of this Centre with the expectation of being with the child the better part of a day, others end up sleeping in chairs beside the bed of the child, in the middle of an uncomfortable environment surrounded by sounds and unknown persons.

It is worth mentioning that, since 1990, the Statute of the Child and Adolescent (ECA), in particular articles 4, 12 and 19, regulates the child entitled to family living and residence of parents in full time during the hospitalization2. From the perspective of family participation by the hospitalized  child, Resolution No. 41/95, of the National Council for the Children and Adolescents Rights (CONANDA), sets that's right of the child, that their managers participate in the diagnosis, treatment and prognosis. That is, the information should be directed to the family in an  understandable and fair way, considering and respecting their opinion and positioning in front of this so difficult situation of family organization3.

However, it is still seen, in this scenario, the familiar despair, during the period in which the child needs intensive care, by ignorance of the real cause of hospitalization and the fear of death and separation. On the other hand, it is realized that the multidisciplinary team uses an overly technical language and far from the understanding of the family, which remain insecure and fragile on the situation.

The family then gets shaken, with regard to their needs in support need and contribution of vocational guidance. Understand what the family of the child has in vista (intention) when remains at CETIP, is paramount in the professional approach, because it provides the knowledge of their  goals. But also, the elucidation of this situation represents for the same and how reorganizes itself with other characters during the internment. In this sense, it is the responsibility of the nurse, not only to enhance the presence of the familiar with hospitalized children, but, above all, understand the reasons that lead to remain with the child in this scenario.

Thus, it was bounded as the study guiding question: what the familiar aims when remains with their child at CETIP?

For the elucidation of this questioning, was drafted the following study objective: learn what the familiar aims when remains with their child at CETIP.

In order to deepen the discussion on this subject was held a search in the databases Literature Latin American and Caribbean – in Health Sciences (LILACS) and Nursing database (BDENF) about available scientific publications about the subject: The familiar companion in the pediatric intensive care unit, using the following grouped keywords: intensive care center (CTI); Pediatric Intensive Care and pediatric nursing; Pediatric Intensive Care and family; Pediatric Intensive Care and family relationships; pediatric nursing and family; pediatric nursing and family relationships; family and family relations.

From the scientific literature, the focus on family assistance focused on the issue of the permanence  next to the child; relations between team-family-child, considering its difficulties and facilities; the experiences of nursing staff; and in the strategies and approaches used by the child family, in different environments of hospitalization. As well as, in the way that the team of pediatric nursing enters the family on assistance, making it the subject of care. Therefore, the development of this study is justified by the lack of research in those databases that comprise the expectations of family members during their stay with the child at CETIP.

THEORETICAL-METHODOLOGY REFERENTIAL

This research was developed using the methodological support of sociological phenomenology of Alfred Schutz, which allowed unveiling the intentions of families of children hospitalized at CETIP to remain with them during the process of admission. To Schütz, the social actor that experience a given experience, expresses its social actions according to the reality in which it is inserted and is the only one capable of expressing the meanings assigned by himself to the phenomenon4.

The action is marked in its intentional and projection character, being primitive from consciousness of the person5. In the case of families of children hospitalized at CETIP, the action motivates them to remain with the child, revealing its intentionality.

The subject that experience the action is in the world of life which constitutes from experiences,  lived relations and future plans, which configure the human being as one that enables the acquisition and sedimentation of knowledge and experiences throughout their life6.

This knowledge body from the lived experiences and possessions of the acquired, is part of its history, therefore, the knowledge is the hand of the subject. The role of each person in the social, moral and ideological system reflects the determined biographical situation. The social world concern the way men interpret his biographical situation7.

Human action happens in relationship with other people, that is, it is established in social, which makes intersubjective and inherent in the social world7. Is coated with an intent that only the subject that experience it, will be able to unveil the meaning and point needs when performing such an action8.

This action takes place in the social world where social actors establish a face-to-face relationship, i.e. the social relation that occurs in the same space and chronological time and that has a inter subjective meaning, which comes from the subjective meaning of the subject on a given phenomenon4-6,9.

In the practice of nursing at CETIP, where technical rigor is present, the establishment of the relationship face-to-face between the professional and the family of the hospitalized children is a disruption of the routine care and escape the mechanism for a moment of interaction and rapprochement, allowing the person to verbalize their fears, contributing to the re-establishment of that family10.

The familiar that has the child admitted in the CETIP establishes the relationship face-to-face with the other escorts present and the professionals who work in child's recovery. The relationship I-you, between the family and the professional, is considered as a contemporary relationship, because there are two people who live together in the same space and time8. The relationship I-we, among the families of different hospitalized children at CETIP is possible only when it is aware of the presence of the other, otherwise settles, only a relative anonymity9.

From these relationships emerges the concept of intersubjectivity that Schütz defines how the interpretations made by my peers, from the subjectivity that is singular8. The social relation refers to the social action that occurs with the other in the everyday world, driven by the motivation that has double possibility. A directed toward the future, i.e., supports the intended project for people acting  in a particular way that are the reasons for, and another that refers to the stock of knowledge acquired throughout life and is related to the past, are the reasons why8.

The scenario was the pediatric intensive care center of a federal hospital of Rio de Janeiro municipality and the study was conducted in the months of January and February 2009. The subjects were 14 families escorts of hospitalized children at CETIP, with length of stay greater than 24 hours in this centre, which has been held by time equal to or exceeding 12 hours per day during the hospitalization of the child.
To carry out the interviews and analysis of the lines were respected the ethical principles contained in the national legislation in force responsible for regulation of research conducted with humans11.

The project was submitted to the Committee of Ethics in research (CEP) of a federal hospital of   Rio de Janeiro state, with registration n° 000.409. After approval of the Committee, was requested authorization of the escorts relatives through the Free Informed Consent (TFCC) that was read and informed by the researcher. It was emphasized the autonomy of the subject to give up the interview at any stage of the study. After the subject accept the participation, they signed the TCLE, before starting each interview. The anonymity of the subjects has been respected using an alphanumeric code – interviewed (E1, E2, E3, ...) to identify them in their testimony.

The question that guided the development of the interview was: Talk about the reasons that takes you to remain with your child during the period of hospitalization at CETIP. The interviews were recorded on cassette tape and later transcribed. The seizure of lines occurred through the phenomenological interview. The central focus of the phenomenological interview aren't the findings of causality of the phenomenon, but questions the 'for what' of the phenomenon, that intention the phenomenon responds12, in order to seize their subjectivity.

Data saturation was observed, after the transcript of the interviews, when there was a repetition in the lines of the subjects and the information already collected pointed to a theoretical discussion, given the objective of this study.

Thereby, it is worth remembering that, after the interviews, the permeated lines of this meanings assigned for all subjects were transcribed and subsequently carefully read seeking the commonality for categorization. This "[...] covers elements or aspects with common characteristics or that relate to each other"13:70 . In this sense, the findings were grouped from similar fragments, which relate to the reasons for lines of family escorts, study subjects, for later categorization.

For analysis of the data was used the sociological phenomena of Alfred Schutz, because makes possible understand the originating reasons in human action from an intentionality that stems from the awareness of who performed it13.

RESULTS AND DISCUSSION

The comprehensive analysis of the talk was held at the sense of apprehension of the intentionality of familiar action when remains with their son at CETIP, i.e. what he has in mind when performing this action.
The precise reading of the lines of respondents revealed the reasons for the action of the relatives’ escorts, to stay with the child during hospitalization at CETIP. These reasons indicate the categories: being next to the child and improving recovery and cure the child, they outline the real reasons that guide the actions of these family members remain with the children even in adverse situations.

Category 1 - Be beside the child

This category shows that the familiar remains beside the child, regardless of their medical condition, out of concern that it not be alone or abandoned. The reports point out that family members believe that even the child being seriously ill, sedated, with the level of awareness changed or in use of ventilatory prosthesis, they feels the presence of the family and for this reason they want to stay next to the child and believe that somehow the child signals that realizes this presence.

 [...] even the child being in critical condition, she knows and feels the presence of the mother, there. Because they give unpredictable signals that we note they are seeing  the people there. [...] because she gave signs that she was seeing and feeling that I was there. (E6)

This category unveils an intentional action and intersubjective of the escort familiar for with the child, evidenced when family members report that, when they are near the child, they do it for love. Intentional action and the intersubjectivity between them happen in a common world for all of us8.

This world is shared by family members and their peers by interacting with each other, each one with its unique biographical situation, that is the experience acquired throughout life. This occurs, in an environment of common communication which, in this case, is the CETIP, where family members and children are united in a community of people and through an intentional connection establishing the intersubjectivity between them8.

For him, feels that I'm around him, that I didn't let him here [...] I'm always talking with him saying that I'm close to him, so he can feels that at this time I was present even near him. (E3)

Another issue perceived in the speeches of the familiar members was the concern to be with the child and not leave them alone, which refers to the concept of social action, which relates to a project intended to be carried out in deed, i.e. family's actions are aimed at not letting the child alone, which explains the effort made by the same to be with them8.

  [...] I chose to stay here with my daughter, I don't want to go and let my daughter here, I want to leave here only with her [...] I want to be on her side [...] I want to be here, close to her. (E8)

I don't care about the time, [...], but I want to stay long enough for leave [...]. (E7)

It is worth mentioning that "social action between the subject carries in the subjective meanings of these subjects"9:679 . Therefore, the action of the familiar companion, as an intended project to be beside the child, is pervaded by feelings of love and affection towards them. This action of the familiar escort is based on the meaning constructed about the child, through their experiences with them.

"All understanding is directed to that which has meaning and only something understood is significant"8:164 . This understanding of action directed towards the child, in view of the family escort, takes place through the interpretation of their experiences with his fellow man. The familiar escort who offers positive feelings to the child performs this action in perspective of understanding he has of being the child, which makes a person significant to him.

Thereby, can be registered the attributes through which familiar care is evidenced. The attribute presence is essential especially in illness situations, as in the case of hospitalized children at CETIP. And, therefore, concerns "the actions, interactions and interpretations through which the family demonstrates solidarity with its members"14:23 . This caution, presence, shown by "being-together, monitor, engage, commit, have concern with the other"14:23 . The family's escorts of the son during the stay at CETIP, show the presence care in the movement of being next to the child in the hospitalization period.

Category 2 - The improvement, recovery and child cure

This category was created from the reports of respondents which highlight the reasons for they remain next to the child during hospitalization, as an intentional project that is healing, recovery and cure of the child, which can be observed in discursive fragments below.

                        What I want is her to be good to stay at home with me. (E5)

It was observed, through the reports, that the family's intention is not only to be present at CETIP, as well as, daily monitor the clinical evolution of the child. The lines show that family members believe in the possibility of recovery and even child cure.

[...] follow the day to day recovery. (E6)

Her cure. Because I want to leave here with her good [...] (E7)

Just be seeing her, thus, recovering well, makes me stay here with her. (E11)

Escort family members to stay with the child, regardless of length of stay and their clinical condition, aim at improving, recovery and cure. The intentional project of these subjects is related to their expectations in the clinic condition of the child and the news about them, and, therefore, remain in hospital.

In order to remain together with their child, motivated to be beside them and monitor their recovery at CETIP, few families are willing to do anything. As a result of the intentional project of these families, it is possible to identify in their testimonials feelings of resignation and abdication of their own lives to be alongside their children. The reports show similarity in the desire of relatives in leave their jobs, their home and even their lives to devote themselves to the child.

I quit work, anything to stay with my daughter [tears]. (E5)

I left all behind [...] we left everything there, we dropped everything [...]. (E2)

Reading these speeches it is possible to perceive the relevance that the child has for the familiar as something intrinsically built, from their own choices and interests, which leads to opt out their dreams, the work and its commitments. This occurs as an element of natural conception of the world regarded as an unquestionable lifestyle in a particular social group, which is characterized by its particular history8,15.

I would leave anything like I did, I abandoned my dreams, I abandoned my house [...]. (E6)

 [...] sometimes I can't eat, I've been without food, here, almost fainting, weak so I wanted was to see my daughter alive [...] when I came here, I saw her situation, I didn't care about home, car, didn't want to know more about money [...]. (E12)

Another issue that emerged from these discursive fragments was the strong participation of women as family companion. It was, in that sense, her willingness to abandon their dreams and even forget their basic needs to stay next to your child. In this respect, a study, points out that if women strengthen community individually in order to support and cope with the difficulties associated with care, using as a reference the socio-cultural matrix of care and their legacies16-18.

Thus, it was possible to evidence that one of the reasons that led the familiar companion to stay close to the child, CETIP, was based on their concern about not wanting them to feel alone or abandoned during the hospitalization period. In addition, the improvement, recovery and cure were also reasons for the familiar to remain beside them at that time.

Thus, is evidence the need to understand the familiar companion as a subject of peculiar characteristics and care demands is not always viewed by the health team. In addition to considering the escort as fundamental in the recovery of the child, we must welcome and guide them as to the real situation of the pediatric patient hospitalized.

It is worth to register that one of the limitations of the study was to deal with the complexity of the phenomenon of inter-subjectivity. Another refers to the limited set of participants and only one scenario that prevent the generalization of the findings.

CONCLUSION

The study enabled the seizure of intentionality of escort familiar action when remained with their child at CETIP.

Thus, the sociological phenomenology of Alfred Schütz has entered in the experience of the familiar companion, from their reports, that particularly offered the opportunity of listen to them attentively, understand their emotions and feelings without judgement of values, but in a face-to-face stance, in a single meeting. This singular moment, which takes place in the intersubjective relationship between the familiar companion and the researcher reveals of future possibilities for the nurse in pediatric intensive care unit, which must be submitted as an intended project, drive shaft as  the triad child-family-professional.

The chosen methodological approach was fundamental in conducting this study, reflecting on how to be a nurse, directing to the realization that this professional, to take the lead of a team, shall draw up their intentional project for their performance, not only in his luggage guided of knowledge gained from their academic training and experiences comprise lifelong but, above all, on inter-subjectivity with their team. In this sense, all have their insertion and can share knowledge and possibilities of an act together and not in the individuality of the actions.

It is the responsibility of the nurse to transform their everyday professional attitude based on context, as well as on insertion of the familiar companion as a needs being.
           
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