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Print version ISSN 0080-6234
Rev. esc. enferm. USP vol.45 no.4 São Paulo Aug. 2011
Scholars' perception about hospitalization: contributions for nursing care
La percepción del escolar sobre la hospitalización: contribuciones para el cuidado de enfermería
Danielle de Freitas LapaI; Tania Vignuda de SouzaII
Ana Nery Federal University of Rio de Janeiro. Resident in the Pediatric Program
at the Pedro Ernesto University Hospital. Rio de Janeiro, RJ, Brazil. email@example.com
IIPhD in Nursing. Professor, Ana Nery Federal University of Rio de Janeiro, Maternal-Infant Nursing Department. Researcher in the Nursing Research in Child Health Center. Rio de Janeiro, RJ, Brazil. firstname.lastname@example.org
The objective of this study was to describe scholars' feelings in terms of hospitalization, and discuss on their perception about hospitalization. It is a qualitative study performed using semi-structured interviews and recordings based on the following atopic for analysis: feelings and perceptions reported by scholars during hospitalization. It was found that the feelings reported by scholars during hospitalization are those of restriction, fear, pain, preoccupation, missing home and others, and anxiety. Most scholars see hospitalization as something negative, though they also report positive aspects such as receiving exclusive affection from their mothers, having access to foods they usually do not have at home and compensations they receive for being ill. Playing emerged as an important activity that alleviates the negative aspects of hospitalization. In conclusion, despite having negative feelings, scholars are able to realize that hospitalization is important for their recovery.
Descriptors: Child, hospitalized; Perception; Pediatric nursing; Play and playthings
El estudio objetivo describir los sentimientos del escolar en lo referido a la hospitalización y discutir la percepción de la misma en la perspectiva del escolar. Tiene abordaje cualitativo y utilizó la entrevista semiestructurada y grabada, originándose el tópico de análisis: sentimientos y percepciones referidos por el escolar durante la hospitalización. Se constata que los sentimientos referidos por escolares durante la hospitalización son de restricción, miedo, dolor, preocupación, añoranza y ansiedad. La mayoría percibe la hospitalización como algo negativo, no obstante, estos sujetos refirieron también aspectos positivos como cariño materno exclusivo, acceso a alimentos no disponibles en domicilio y compensaciones recibidas por estar enfermo. El juego mostró ser una actividad importante que ameniza los aspectos negativos de la hospitalización. Se concluyó en que a pesar de sentimientos negativos, el escolar es capaz de percibir que la hospitalización es importante para su recuperación.
Descriptores: Niño hospitalizado; Percepción; Enfermería pediátrica; Juego e implementos de juego
A hospitalization generates considerable anxiety, which is reflected in children as a whole and in their perception and understanding related to the hospitalization period(1). Children are emotionally affected given the fact they have to be restricted to the care of a legal guardian, who remains at their side during hospitalization, and in addition to being temporarily removed from their family environment, they are also deprived of social and school activities, even if temporarily.
When hospitalized, the child becomes twice ill, that is, in addition to the physical pathology, his/her psychological may also suffer because the hospital environment is not conducive of a child's well being(2).
Therefore, the way a child perceives the hospitalization and his/her own disease is directly linked to the process of recovery of his/her health and will also result in feelings that should be taken into account during nursing care. The child may have an erroneous or distorted perception of hospital and which can biopsychosocially compromise the child.
Disease and hospitalization are the first crises that children are faced with, especially during their first years of life, because these represent a change in the child's usual health state and routine. Children at this age have a limited number of coping mechanisms to deal with stressors. That is, the reactions of children to these crises are influenced by their age and developmental stages: previous experience with the disease, separation or hospitalization; innate and acquired coping abilities; severity of the diagnosis; and the support system available(3).
Hence, nursing professionals should consider that in addition to the disease there are feelings arising from the separation the child experiences from his/her family and social environment, who's historical and cultural context will not be the same after his/her hospitalization.
Therefore, given the importance of studying the subject and aiming to improve knowledge concerning children's perception of hospitalization, this study was guided by the following questions: What feelings are externalized by school-aged children in relation to hospitalization? How do children perceive hospitalization?
To describe the feelings of school-aged children concerning hospitalization and discuss the perception of hospitalization reported by children. The perception, feeling and meaning built and manifested by the children concerning the hospitalization are taken into account. We assert that feelings are triggered by the children's perceptions, that is, by the way they perceive the world, which in this study encompasses the period of hospitalization.
The study has a qualitative approach. The study's setting was the pediatric hospitalization unit of a general hospital in the city of Rio de Janeiro, RJ, Brazil that cares for children 30 days to 12 years old with varied clinical and surgical diagnoses.
The individuals participating in the study were six school-aged children between six and 12 years old who were hospitalized during data collection. The author randomly chose names of characters from children's stories according to the children's gender in order to keep confidentiality: Little Mermaid, Chico Bento, Peter Pan, Cebolinha, Cinderella, and Little Bamm Bamm.
The project was submitted to and approved by the Ethics Research Committee at the Anna Nery Nursing School because the institution where data collection was carried out did not have its own committee (Protocol nº 109/07).
Only school-aged children who consented to participate through an informed consent form and whose legal guardians also authorized their participation through informed consent forms were included in the study. The forms were based on the National Council of Health (CNS, Resolution 196/96).
Data collection was carried out from April to May 2008 through an interview script with the following items: identification data (name, age and diagnosis); and the question: What was your hospitalization like and how you feel about it?
Based on the reports obtained in the children's interviews, the following topic of analysis was constructed: feelings and perceptions reported by children during hospitalization.
RESULTS AND DISCUSSION
Feelings and perceptions reported by children during hospitalization
This topic of analysis presents the feelings recounted by children during hospitalization, which are: sense of restraint, longing, fear, happiness, concern, anxiety, desire to be discharged and pain.
Three of the six interviewed children reported the feeling of constraint during hospitalization
...we can't do anything, only lay down and sleep (Cebolinha, 7 years old, cellulite on the instep of foot).
... you can't mess around... I can't run, play or jump, I can play but not run, jump, no (Little Bamm Bamm, 10 years old, burn on the face).
...it's pretty bad to stay here locked up... (Peter Pan, fractured forearm).
The reports of children reveal that they perceive themselves restricted to bed or to a determined space in the hospital, whether it is the disease or the facility's organization that prevents them from performing activities that demand the expenditure of more energy such as running or jumping.
It is known that children cognitively, biopsychosocially and physically develop through play. It is through play that children manage to deal with loss, to fight to obtain success, to live in groups, to be creative, exercise and strengthen the muscle groups when running, jumping and skipping(4).
In relation to being restrained, Peter Pan's report reveals the loss of autonomy in relation to the use of the TV and choice of play activities:
...there is a TV but the TV is bad and when I want to watch it ...then the TV doesn't work. And the TV is not mine. I can change channels at home... the woman there where I play only wants to play her game, only if she's going to play with this game we have to play also... A very mean physician, that one from the playroom... She keeps yelling at people... yelling, saying that if we don't play the game we're going to the bedroom and lie down... she only wants to do what she wants to do... (Peter Pan, 10 years old, fractured forearm).
The school age is a period in life when children seek autonomy; it is a phase when group activities are initiated, when freedom becomes important. Hospitalization keeps children passive and idle, prevents them from exercising their independence and autonomy, invades their privacy, negates their right to control their bodies and make decisions concerning themselves(4).
Therefore, the worst part of hospitalization is not the medication or venipuncture, but the rupture it causes in children's routine, the freedom they have at home(5). Despite the humanizing proposal of kid-friendly hospitals, these still have characteristics of general hospitals with activities having established schedules and times to be performed. Life proceeds in all aspects of daily routine such as sleeping, eating, playing and studying though in the same place and under a single authority(6).
Taking into account these aspects, the following report shows the need for children to play:
But I find it a good deal because there's a playroom right there... so I go there and play checkers, domino, play with construction toys, and have fun. I have fun there" (Peter Pan, 10 years old, fractured forearm).
There is evidence that a playroom turns the hospital environment more pleasant to children, which enables them a way to entertain, relax, and permits them to divert their attention or even forget for a while their situation of hospitalization and disease because this type of leisure is a pleasurable activity for them.
Playing is essential in a child's life to promote harmonic growth and development. When play is transferred to the context of hospitalization, where the routine of life is changed by the disease, playing emerges as a possibility of children to understand the situation they are experiencing(7).
Hence, one of the ways to help a child to comprehend what s/he is experiencing is the therapeutic toy, which works to release fear and anxiety and allows the child to reveal what s/he thinks and feels. The therapeutic toy is largely recommended in nursing care delivered to children(8).
Therefore, through play, children can show their perception of hospitalization:
I like to play doctor. Sometimes I play doctor with my mom here. I say that my mom is sick and play. I have a lot of vaccines I get with that lady"(Little Bamm Bamm, 10 years old, facial burn).
Children transfer medical procedures they experience during hospitalization to the play activity, which lets them in their imagination to become active rather than passive in this action, that is, they become those who perform the procedure, who possess power and control over the situation, a phenomenon known as catharsis. This phenomenon allows health professionals to work with the children's perception concerning a given event to make this experience as non-traumatic as possible to children.
Catharsis can be seen as relief or purification of an individual. And the cathartic function of a toy, in addition to enabling the diagnosis of a conflict the child is experiencing, also has a healing function because it works as an escape valve reducing anxiety(9).
Still in relation to catharsis, during the interview with Chico Bento, he asked whether he could draw, to which I affirmatively answered, and he drew on a piece of paper a bus, a boy with a bicycle and a nail in his foot, which can be seen below:
When I asked him to explain the meaning of the draw, he explained:
I was riding my bike...then I got off my bike and was walking and then I stuck my foot... I stepped on a nail... Then we went to the hospital by bus... we went from a place to another, and from one place to another, that's why I got an infection in my bone... then after a few days... we went to a bunch of hospitals, I had a shot, then the bus was hit... and we ended up here (Chico Bento, 12 years old, osteomyelitis).
The child manifests the need to tell what happened to him and what trajectory was taken so he would be hospitalized, and we assume, by the difficulty found, it made an impression on him, especially by the association with osteomyelitis, which causes pain and requires a prolonged venous treatment.
He passed through many hospitals at first, was finally cared for, received a tetanus shot and was discharged. After some days, his condition worsened. Then, in the search for a hospital, the bus in which he traveled was involved in a traffic accident and as a consequence he was sent to a general hospital where he was diagnosed with osteomyelitis and was hospitalized.
It is crucial for children's development to be free to transform an event, in which they were passive subjects, into another in which they are active and able to control the situation they once experienced. It makes the child understand s/he does not need to be the helpless victim, and through play, the passive suffering is mastered and traumatic events can be better dealt with(10).
Another feeling expressed by the children was longing:
I miss playing (Peter Pan, 10 years old, fractured forearm).
I miss my dad and my brothers (Bamm Bamm, 10 years old, facial burn).
I miss home, my cousin... (Cebolinha, 7 years old, cellulite in the instep of foot).
The reports reveal children miss their routine, which was changed by the hospitalization, leisure/sport activities and their relatives. Hospitalization breaks their daily routine and the child experiences an unfamiliar new reality. An important aspect related to hospitalization is the distance it causes from the child's daily routine, which contributes to negative feelings about hospitalization to arise(5).
Another feeling reported was fear as the following report reveals:
...I'm afraid, they already assaulted a woman there, almost assaulted a woman, so that's why I'm afraid my mom goes there... I'm also worried she goes out there on the street, because there're a lot of punks around, they hit women (Peter Pan, 10 years old, fractured forearm).
Fear emerged in Peter Pan given his insecurity that his mother might become a victim of urban violence. This fear is justified by the fact he witnessed a violent situation on the street and he believes the same may happen to his mother. This fact shows that events from the world external to the hospital, transferred by the child to the hospital during his hospitalization, may emotionally affect him and also interferes in the hospitalization process. This feeling emerges from a situation in which the person feels threatened, which is conceptualized by Ferreira as a feeling of deep concern in the face of a real or imaginary danger or threat(11).
The fear of being abandoned was also reported:
...I didn't want to stay hospitalized here when I was down there, I thought my mom would leave and go home while I was asleep. I stayed awake until my mom felt asleep and then I slept... It bothers me at night, I can't sleep without my mom close to me (Cebolinha, 7 years old, cellulite in the instep of foot).
I only get afraid when my mom leaves me (Bamm Bamm, 10 years old, facial burn).
The maternal figure is seen as a protection because in an environment where all professionals are strangers, the presence of the mother in this case, is the child's reference point for affection and security. The child is afraid of the unknown because s/he does not know what is happening, cannot foresee what will happen and also fears s/he may be abandoned by relatives(4).
However, despite the feelings of longing, fear and being restrained, we can highlight that three children reported they liked to be hospitalized:
I kind of like it... my dad is going to prepare a party at home when I go back home (Little Mermaid, 6 years old, hemorrhagic dengue).
I like it a lot... 'cause my godmother works here (Cinderella, 6 years old, cerebellar syndrome).
My mom is good to me, she gives me love, makes me sleep. So I like it. Only that... I eat here, there's a lot of food here, here I can eat everything, I can drink chocolate milk, yogurt, coconut water, Danon, can have everything (Little Bamm Bamm, facial burn).
Enjoying hospitalization is related to the feeling of compensation, of receiving something in exchange, being compensated in some way, either through parties or even through affection and attention received from family (godmother and mother) in addition to the opportunity to eat food not available at home.
However, if a child has a severe pathology, with systemic complications or a chronic clinical pathology that requires frequent hospitalizations and a more intense therapeutic apparatus, s/he probably has a more difficult and hostile perception of hospitalization(10). Chico Bento, the child with the diagnosis of osteomyelitis, is an example of this. Despite the fact his disease is not considered a chronic condition, it requires prolonged treatment and invasive therapy. This child, as opposed to the others, does not like the hospitalization because he had to be punctured many times:
... I don't ... because it's very bad taking an injection all the time (Chico Bento, 12 years old, osteomyelitis).
Therapeutic procedures often cause pain and become objects of anxiety and dislike, while all children fear a body injury after the first year of life(3).
Two children report the importance of the hospitalization for their recovery:
It's very bad... But staying here in the hospital is somewhat good; I'm going to get better" (Peter Pan, 10 years old, fractured forearm).
It's good so the fever goes away faster" (Little Mermaid, 6 years old, hemorrhagic dengue).
Even though the children consider the hospitalization an undesirable situation, they understand its importance for their physical recovery. Children have a much more optimistic view of the disease than adults. Even if they are not clinically well, they find reasons to have joy(5).
Chico Bento, who was temporarily bedridden to treat osteomyelitis, reported a feeling of happiness tied to play:
Because I play with things, my mother cheers me up, so I get happy... the doctor said to give me (toys)... because I couldn't walk... then my mom bought a lot of toys for me (Chico Bento, 12 years old, osteomyelitis).
The happiness expressed by the child originates from affection and attention his relatives give him during the experience. We also note that the happiness related to the act of playing as well as to the act of giving presents appears as a way for the family to express its affection and compensate the child for being ill.
Peter Pan's report shows a concern related to his mother:
I guess she's not feeling well because she stays on this chair, the chair hurts her all over... (Peter Pan, 10 years old, fractured forearm).
The child is concerned with the mother's lack of wellbeing. It is worth noting the fact that his mother complained all the time during the interview about the uncomfortable chair and about the possibility of losing her job, which can possibly generate feelings of guilt in the child for being hospitalized.
Therefore, hospital facilities should provide comfort conditions for one of the parents or a legal guardian during the child's hospitalization(12). However, in many health facilities, not only Brazilian but also international ones, the physical area is organized only with the child in mind. The lack of or insufficient physical space and appropriate accommodation for the companion increases suffering that accrues from hospitalization and generally the reason for hospitalization is less of a concern compared with the consequences of confinement(13).
It is plausible that if the mother does not manage to rest, she may spend the day irritated and nervous and the child may perceive her dissatisfaction and feel guilty for the situation. For the delivery of humanized care, a hospital environment has to properly receive not only the child but his/her family as well, who jointly experience the process of hospitalization and disease.
One of the children reported being nervous due to the hospitalization:
I got nervous... I feel something inside my body... get nervous (Peter Pan, 10 years old, fractured forearm).
This nervousness reported by this child might be anxiety for being hospitalized that he identifies as being nervousness. All the suffering experienced by a child has a common effect: anxiety, which is in itself new suffering. Anxiety brings with it a feeling of fear, insecurity, restlessness, continuous distress, lack of confidence in oneself in the face of people and situations(4).
Peter Pan also expresses his desire to be discharged from hospital:
I'd like to leave soon...tomorrow... I hope that this other surgery I have to do, I hope it works, so I can leave soon... so I can play with my friends, do a lot of stuff... Now, I just wanted to be home... I have to get better soon so I can go home (Peter Pan, 10 years old, fractured forearm).
It is worth noting that the child sees the length of hospitalization as an impediment to his performance of daily activities, an obstacle to his independence, time lost and that is why he is concerned to be discharged as fast as possible(3).
Another interpretation that can be given to the desire to be discharged is related to the fact the child needs to be valued, explained by the need of affection. Hospitalization reduces the opportunities one has to daily relate to his family and significant people, which may trigger in the child considerable need of affection(4).
The feeling of pain appears in the report of children when they talk about their perception of hospitalization
...I felt a lot of pain, but now I don't feel pain anymore, much pain, only sometimes (Chico Bento, 12 years old, osteomyelitis).
This report shows that pain appears as a clinical manifestation of the condition the child has, which was osteomyelitis.
Pain is an experience characterized by complexity, subjectivity and is multi-dimensional, thus it should be seen as a complex experience that involves the whole body and not only physiological components(14).
The pain experienced by a child can be seen as a multi-dimensional perception modified by emotional, family, cultural, environmental and developmental factors(15).
Given this concept, it is worth considering that Chico Bento was the patient with the longest period of hospitalization at the time of data collection (43 days) among those participating in the study and remained bedridden for a long period, which might have influenced his sensation of pain, aggravating it at the beginning of hospitalization. This fact may have changed not only because of the medication therapy but also because the child managed to adapt to the hospital environment and was no longer bedridden, being able to resume activities that were part of his routine, such as playing with other children.
Pain changes a child's emotional situation in the same way as the emotional may increase the sensation of pain. The authors of a study carried out with adult individuals verified that painful sensations are associated with an individuals' psychological state, to nervousness, emotional tensions of every day life, affective needs, and personality(16).
Pain can also be related to venipuncture:
I don't like injections. The woman here at the hospital enjoys sticking people. She likes to punch holes. She knows it's not hurting her...the woman put this thing wrong... the woman who stuck me. It's folded and it shouldn't be... She stuck me only twice but then when she lost the vein, then the woman had to make another. Look at the injury! She did it, now she put it here... it hurt but now it's ok...that baby was stuck lots of times. A lot, do you know what a lot is? She stuck the kid a lot of times. (Peter Pan, 10 years old, fractured forearm)
The child relates the venipuncture to a way to injure the skin, indicating responsibility for the hematoma and the crust that formed in the site, showing it to one of this study's authors, and also mentioned the way the device was fixed, which he considered to be wrong, indicating he understands the hospital culture. His perception concerning the health professional is also noteworthy. He sees the health professional, who is probably a member of the nursing team, as the one who punctures, hurts, makes him to feel pain.
Among the invasive procedures that cause fear are injections(10). In a child's mind, a needle that punctures the skin is associated with pain and suffering and is therefore feared by any child hospitalized in a pediatric unit(17).
Witnessing the treatment to which other children are submitted may trigger in children the feeling of fear because the child observes a situation s/he may experience him/herself in the future in the hospitalization unit(10).
In addition to the fact that venipuncture is an invasive procedure, the report of Peter Pan indicates the professional behaved inappropriately when administering the medication during the night shift:
...I was sleeping... about 4am...the woman came to give me medication... she said: shit! Because it was like this (he simulated the device folded)...she thought I was sleeping, but I heard her talking... They don't want to work. They just want to stay there, yelling at people, the physicians there... The hospital is pretty bad. Every hospital I go is bad... I really wish to leave this hospital because there are bad people here (Peter Pan, 10 years old).
During hospitalization, an experience mediated by physicians and nursing professionals, children internalize actions mediated by expressions, that is, signs that indicate imposition of power, and build spontaneous concepts concerning the behavior of health professionals(17).
The results are evidence that most of the children have a negative perception of hospitalization. This perception is closely related to loss of autonomy; to being restricted to the hospital environment; to being distant from family and friends; and to pain related to invasive procedures and/or to the pathology itself. However, despite the negative aspects of hospitalization, the child generally manages to understand the importance of the hospitalization for her/his recovery and also identifies other positive aspects such as: the mother's exclusive affection; access to foods not available at home, and compensations received for being ill such as toys and parties.
We suggest that health professionals value toys and play as a way to minimize the children's negative feelings and also create opportunities to listen to their perceptions and heed their doubts and needs.
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