ENTRAR            

ORIGINALS

Barriers for the Care and Communication in pediatrics intensive Care

Purificación González Villanueva^1
1Universidad Europea de Madrid. Facultad de Ciencias de la Salud, Departamento de Enfermería. Madrid, España

Mail delivery: Universidad Europea de Madrid. C/ Tajo s/n, 28670 Villaviciosa de Odón (Madrid), España

Manuscript received by 21.2.2009
Manuscript accepted by 8.6.2009

Index de Enfermería [Index Enferm] 2009; 18(4): 234-238

How to cite this document

Abstract

The purpose of this investigation was to describe, understand and interpret the knowledge and experiences of children between 6 and 12 years old in a pediatric intensive care unit (PICU). The quantitative methodology used has been to study the cases from an ethnographic point of view. Data has been collected in a four level* hospital of Madrid and in the homes of the children by using participating witnessing and semistructured interviews with two girls and a child, their families, PICU professionals and a nurse of the pediatrics section of the hospital. Among the results, the barriers for the care and communication is one of the topics that have turn out related to the main subject of the study: the physical and emotional suffering of children. Part of the conclusions show us that there is a tendency to consider children as passive persons. No value is given nor taken any profit of their capacity to understand what is happening to themselves and express it; to interchange ideas and opinions about their welfare, their health situation and participation in their care. Parents and families keep themselves in a second plane.
Key-words: Child hospitalized/ Need/ Fear/ Own experience/ Nursing/ Intensive care/ Critical care/ Coping/ Psychology intensive care/ Adaptation.
*(Translators Note: A Class 4 hospital denotes a facility providing all medical specialties and services.)

Introduction

    Even though there is enough bibliography about children hospitalization, the topic is usually treated from the parents and professionals perspective. It has not been easy to find literature which manifests the child viewpoint. In our country, the authors that present a higher number of publications are psychologists or pedagogues (Flórez y Valdés, 1987; Polaino-Lorente 1992; Sobrino et al. 2000; Ortigosa et al. 1996, 2000; González y Montoya, 2001). Flórez y Valdés (1986, 1987) refer to the role of the nurse in the child care, emphasising not only the mere health aspects, but also the psychological and social spheres. Polaino-Lorente and Lizasoain (1992) hold that the child's hospitalization may cause psychological alterations even if it lasts for a short period of time. In her book titled Children's understanding of illness, Cristina del Barrio Martínez (1990) offers a view very close to the child added to the possibility of a deeper comprehension of what being ill may means for it. Lopez et al. (2001) state that during hospitalization we find ourselves in an unknown environment. The hospital presents a strict structure, a complex division of tasks, an elaborate hierarchy of authority, certain particular communication channels and even an specific language. It is all very different from the usual environment surrounding the child and its family. The hospitalized child suffers genuinely and this fact is not always understood by the assistance team within the medical centre. All the authors agree that hospitalization is a potentially stressful experience for the children and their families (Callery and Smith, 1991; Palmer Darbyshire, 1993; Hart & Bossert, 1994; Coyne, 1995, 1996, 2006; Shields and Nixon, 1998; Melnyk, 2000; Espezel y Canam, 2003), but the analysis is mainly focused on adults.
    Regarding the hospitalization in paediatrics intensive care units (PICUs), Board & Ryan-Wenger (2000) review the state of the art covering 15 years (1982-1997). They find out that the concepts most frequently analyzed are related to stress, mainly suffered by the parents. Their research suggests that there is a big discrepancy between the mothers and the fathers, that not all the PICUs have the same characteristics, and specially it remarks that there is not enough research on the child's perspective and the PICU hospitalization long term effects.
    Different authors analyze the children experience in a PICU. Carnevale (1997) has made a phenomenological analysis describing the experiences of 17 children with ages between 8 months and 17 years old. The monitoring has been done during a minimum of 3 months up to a maximum of 5 years. The short narrations contained in the article show us known situations, that is, critical situations in which children are treated as ill individuals. Illness is analyzed and all the aspects related to it are considered. However, neither the child nor its family are taken into account. Once the situation of disease is overcome, some boys and girls undergo a transformation and change their behaviour. They suffer relational problems with their family and, after all, many gaps appear which distort their evolution and their incorporation to the everyday life. Parents do not know what is happening, why their child is not "the same child" as he was before, and do not know either what to do. Coyne (2006) carries out a research based on the Fundamented Theory. He uses a sample of 11 children, 10 parents and 12 nurses from four hospitalization units within two hospitals in England. The work remarks very clearly the importance of counting on the children viewpoints and perceptions, and the need of identifying the strategies that might help to involve those children in the health services. It also maintains the imperative need of listening to the children views and evaluating the decisions affecting their well-being. Among the results obtained, it is clearly concluded that the most of the children want to be asked for advice and want be involved in their care and the decision taking process. They also want their opinions about the care process and the medical treatment to be respected. They demand information in order to understand their illness and training for the procedures and any possible action that might help them to feel better. Some children state that doctors do not explain them the issues and technical terms create them confusion.
    In our country, the bibliographical revision shows that the fundamental problems at the PICUs are still those related to illnesses, medical complications and technological aspects. This situation made me face the current analysis and explore the cognition of the hospitalization in the PICU through the children.

Methodology

    This research has been developed through an analysis of multiple-cases taking an ethnographic approach. In order to design the multiple-cases, several single-cases are simultaneously used to examine the reality through its desired process of being explored, described, explained, evaluated or modified (Rodríguez Gómez, 1999:96). The election of an ethnographic approach for the study of the cases has been pertinent since, following Van Manen (2003:40), the analysis of the cases and the ethnographies focuses very appropriately a particular situation, a group, a culture or an institutional location in order to analyze what happens, in which way "such" individuals, or the members of such "group", perceive things. A cases analysis is not a samples research. The main objective of a case analysis is not the comprehension of other cases. The first aim is to understand such case. (Stake 1999:17). Only one case is analyzed, or a few cases, but they are analyzed in depth. The real aim of the cases analysis is not the generalization but the particularization.
    The fieldwork started on December 2004 and ended on February 2006. It took place in diverse scenarios and at different moments: (1) First contact with children and parents in the PICU, next to the child's bed; (2) In the paediatrics hospitalization floor, after the PICU discharge; and (3) at the child's home.
    The hospital at which the study took place is a level four hospital in the autonomous region of Madrid. The PICU can hold up to 16 children. At the moment when the study was carried out the visiting hours were 1 hour in the morning and 1 hour in the evening. The paediatrics hospitalization floor does not have visiting hours. The names of the hospital and participants are all fictitious in order to protect their identities.
    The participants were two girls named Saray and Lira, one boy named Raul, their families and the professionals of the PICU and the paediatrics hospitalization floor. Once the authorization of the child and its family was obtained, the children interviews were done standing at the end of their beds. Those were initial contacts with very easy questions about their state, their family, school, etc. Games constituted an essential element in order to establish a relation with the children. Even if they were not feeling well, the three children were always ready to play, paint, draw. In the hospitalization floor the work with the children was done inside the room. Sometimes the parents were present and therefore participated, other times the work was done only with the children. The most of the tasks done with the children were done through games, drawings and conversations about the aspects which were important to them.
    Besides the children and their families, I have worked with PICU and hospitalization floor professionals, holding interviews in depth with them: in the PICU I have interviewed four nurses, the supervisor of hospitalizations, three doctors and the chief of the department. In the hospitalization floor I counted on the participation of one nurse.
    Saray and her parents. At the start of the study, Saray was 11 years old. It was the second time she was undergoing a liver transplant. The scenarios in which the study took place were the PICU and the paediatrics hospitalization floor. The interview at home could not take place as she passed way at the hospital.
    Lira, her parents and her sister. Lira was 10 years old. She was admitted at the PICU with a respiratory failure but her base illness was spinal medullar atrophy type II. The scenarios where the research took place were the PICU, the hospitalization floor and her home.
    Raúl, his mother and his sister. Raúl was 12 years old. His base illness was a pulmonary atresia. He was admitted to undergo a surgical technique: Fontan. The scenarios where the research took place were the PICU, the floor and his home.
    One of the main concerns of this work has been to transmit the children and their families that their participation was completely voluntary. Their identity has always been protected. Their parents and families have participated in a direct or indirect way. Apart from asking them for the authorization to work with their children, they have been invited to participate in the conversations and activities maintained. The recorded interviews took place with the prior authorization.

Results

    Several ways of performing open codification exist within the data analysis methodology (Strauss and Corbin 2002:131). In our case we have followed the line by line, sentence by sentence natural analysis, following Medina's proposal (2005:57) of the Glasser and Strauss method of the constant comparisons. This author considers three phases which are not three differentiated moments of the analytical process, but three different operations (data reduction, data layout and conclusions retrieval). We have carried out an initial data decomposition from an emic perspective or descriptive dimension of the analysis, followed by a posterior synthetic reconstruction from an etic perspective or interpretative dimension.
    The main topic emerging from this study is the childrens physical and emotional suffering. Through the analysis done, we can see that they suffer because they are inside a Unit which inspires fear in advance. Besides, they are on their own. The children live the ICU hospitalization with fear, fright and an important stress level. The three of them present attitudes and use expressions that point out feelings of threat. The night at the ICU is one of the factors producing highest stress levels. Specially Saray and Lira present behaviors which make us think that they feel afraid, afraid of something happening to them, and afraid of dying. The most of the professionals admit the importance of the fact that parents do not accompany their children; nevertheless they have been using that work system for thirty years, and it seems that anything implying changes will not be easy, at least at the moment, even for those aspects that might seem "obvious" like permitting the parents entry in a more flexible way.
    The data analysis points out the keys to understand the fact that professionals practice is so much focused on the techniques and on the psycho-pathological approach of the child: the barriers for care and communication. This idea is constituted by three meta-categories: the hegemony of the medical knowledge, the communication problems and the tradition, routines, habits and beliefs.
    We can approach to understand the topic via the voices of the actors related in the existing literature: "In the early 80s, through the research of a medical intern resident, we started to have information on how the children felt, how the hospitalization affected them after leaving the hospital, and how the process affected them during the first 3 months. She detected several things that... up to that moment we hadnt even suspected... the children did not eat after leaving, they had important problems to get to sleep, they had nightmares. After 15 days... they all were feeling... very badly!... they were damaged!; they were psychologically very traumatized" (Chief of Department, PICU).
    After these short comments of the Chief of Department, it seems remarkable that even if already in the 80s they had information and knowledge about the effects suffered by the children during their stage at the ICU , today, 25 years later, the ICU operational rules concerning the entry of parents are still the same. This is not easy for the parents to understand, as the words of Lira's mother reflect: "It leaves a lot to be desired... the ICU for children with.. how can we call Lira's thing?... tetraplegia? It is a serious handicap, she has a 98%. They only allowed me to stay with her one hour in the morning and one hour in the evening. For me that is a failure, a failure, this question of the visiting times. It is a failure for children who can not move, nor communicate, even if they their mental capacities are fine, don't you think? And... even more at her age, when you are 10 years old you already think many things... and all of this... " (Lira's mother, at home).
    The most of us have in mind the children's emotional, recreational and relational needs and the fact that they do not seem to be properly satisfied. Why does this happen? Probably the biomedical model should be exceeded by adding the healthcare practice. Nevertheless, as Medina points out (1999:68), the biomedical science is not a synonym of the healthcare practice. De la Cuesta (2004:3) shows that taking care is not the mere execution of tasks nor the implementation of the procedures prescribed by the practitioner. Healthcare connects the carer with the person taken care of, and the importance not only of the technical competence but the constant presence must be remarked. Berner (1987:161) explains that even if medical prescriptions offer many guidelines for the nursing activities, a nurse must use her own discernment to put them into practice. This question arises frequently at the ICUs where the difficulties entailed by the lack of sleep can become more important than the problems originated by stopping or delaying a certain medical treatment. The descriptions provided by Benner show the importance that nurses give to patients with the consequent adaptation of the treatment to the person needs. With such facts, it would be pertinent to ask ourselves about the reasons why nurses are so much subordinated to follow the medical prescriptions leaving aside many aspects that contribute to develop nursery cares.
    "Comfort. it is mainly a question of comfort, because dealing with the emotional situation created when the parents are there is not comfortable, you dont know what to do, you dont know what to say. I think that it is more of a question of comfort" (Elena, nurse).
    "It is bloody bad to leave an awake child alone, I mean, it is terrible! [Then, Carmen, why is it done? ] Why? I dont mean it is because..., firstly it is due to routine. I dont know if it can be called idiosyncrasy or rubbish, in other words, it is a habit. It is true that being with the parents implies having to control certain ways of talking, of being, you understand?, but this is something which can be learnt, like everything" (Carmen, doctor).
    It is crucial to consider the institutional environment in which the nurse work is developed as particularly determinant for the nurse health cares (Collière: 1993:280). The nature and characteristics of this work could not be isolated from other determinant factors which have a preponderant influence on it. Besides, the persons taken care of, the professional groups and the institutional media are affected by the socio-economical, cultural and political flows which settle inside the societys projects and value the ways of approaching the health-illness process.
    All these systems can, at the same time, group together, encourage each other, reinforce each others, oppose each other, exclude each other and act in a complementary or antagonistic way. Still nowadays, a generalized status of submission of the nurse with regard to other health professionals exists (Medina 1999:33). It can appear more implicitly or explicitly and it is manifested in the rituals of power observed daily in the health services and hospital units.
    "We have had them (referring to joint professionals meetings) and I think that we do not have them because of... the idiosyncrasy of each one; because there are lot of people who do not feel comfortable in that kind of meetings. We would need professional support to make them less hierarchical. When they are established in such way... some people listen and some people are quiet" (Nursery Supervisor).
    "Here each one deals with his own stress and... I already have enough having to face my... superiors and all of that, for having to, on the top of that, count on that floozy... I already have enough with hearing the doctors lecture" (Elena, nurse).

Discussion

    The main idea highlighted along this work is the fact that the child is treated like a passive subject, like "something" to which "things" must be done, techniques and complex procedures must be applied with risk for his life. That is the reason why he is sent to the PICU, a place where technology has a crucial role and determines the space and time rhythms. The professionals who work there have high technical skills and good capacity of reaction to potential complications. In the opinion of such professionals, the child and his needs from the human viewpoint, -that is physical needs, emotional needs, relational needs-, become a secondary issue. According to Good, moving from the medical language with its biologicist grammar towards the relational language is not an easy task (2003:32). For sure this approach is the base of most of the reasons why parents have such restrictive visiting times. Their presence and participation are not part of the prime needs although almost everyone remarks the importance of the parents presence for the child.
    The results of the study show that there is a tendency to consider children as passive subjects with little respect for their rights. Their capacity to understand and express what is happening to them is not valued nor taken advantage of; the same happens with their capability to exchange ideas or opinions about their well-being, their health situation and the participation in their care process. Parents and family are kept aside. The restriction in their visiting times does not permit the adequate presence to practice their parents role as responsible for their children, giving them in such way emotional support.
    A hierarchical relation doctor-patient is established in which children and parents are treated like passive subjects without the capacity to participate in the care process, and with little possibilities to interrelate with the professionals. According to the data of the professionals, doctors and nurses have difficulties to communicate among themselves. Using some of their own expressions, they are two separate strata between which communication does not exist. Although they appreciate each other, they do not know how to connect. They work together, but each one does it from his own perspective. I would dare to say that they both establish different types of "monologues", but it is necessary to reach the "dialogue" in order to understand their relative viewpoints and succeed in achieving an integral care for the children.
    From my point of view, this is a fundamental topic in order to achieve an interdisciplinary relationship in which different ways of knowledge, like the nurses knowledge on how to practice the nursery cares, will be admitted.
    Decreasing physical and emotional suffering means overcoming the barriers of care and communication and improving the knowledge of practice for the children to be treated as subjects, and for the parents' role to be eased. The fundamental barriers detected within the results of this study are placed in the biomedical hierarchical, authoritarian and hegemonic model. This model is not only practiced by doctors, but is part of the foundations of the health institution; it is a model forged with the tradition, the values, the habits, the beliefs, and in short it holds on an important socio-historical burden. In a certain way, all the professionals seem to be trapped inside a kind of "funnel" due to the limitations generated by such model. It is a sort of corset which does not benefit anyone. I think that the possibilities of improvement necessarily imply the construction of a more democratic and egalitarian health-care model within which everyone contributes to build a communication and participation field for the children and family care. This will benefit everyone, not only the children and families, but also the professionals and the society on the whole.

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