**3. The hospitalisation process and the phases of infant and juvenile development**

It is important to highlight that every child has a chronic disease, regardless of any diagnosis, first and foremost, that of being a child. This fundamental and obvious condition is unfortunately often forgotten by healthcare professionals, implying that the general level of maturity and response expected of these small patients is not consistent with the evolutionary period in which they find themselves. Thus, it is fundamental to consider the aspects of infant development and the principle characteristics of each phase when reflecting upon the attention paid to the health of chronically diseased children.

During the first two years of a baby's life the baby literally discovers the world through its relationship with the maternal figure and her corporal reactions and sensations. The child moves from a state in which everything resolves around them to the discovery of the outside world

The child's behaviour is based upon the perceptions constructed through the sensory exploration of the world and physical activities. Disease and medical procedures which cause pain and discomfort can seriously compromise the baby's relationship with their environment and themselves (Muriel et. al. 2011).

This is a period in which the child avoids the unknown, experiences distress and anguish at the mother's absence, what Bowlby (1984) describes as attachment. Because of this, situations of chronic disease and fear can trigger extreme reactions including crying, frightened expressions, inertia and greater dependency in their behaviour. Fear can be aroused by the presence of unknown persons, unknown places or situations, and the response will vary depending on a child's age, duration of separation and the degree of deprivation to which the child has been exposed (Bowlby, 1984). In spite of knowing the importance of early experiences in the baby's life, we still see, in practice, some healthcare professionals that believe that because of the fact that their client doesn't present a developed verbal language, chronic disease will somehow not have so many repercussions in their lives.

After this period, the child enters the Pre-operational phase (Piaget, 1976) where its first mental concepts are formed and the process of internalising reality commences. The imagination finds itself indulged in activity and mental reasoning but forms magical beliefs and inadequate concepts characterised by ego-centricism and animism. Accordingly, it is fundamental to take care with the information given to children because their thinking is egocentric and they are unable to articulate or relate to different points of view to their own.

Infantile Hospitalisation and Chronic Disease 243

friends, family, peers and games. In general, "the activity and freedom characteristic of childhood are replaced by passivity, leaving few options for the child to make choices"

This change produces an estrangement from the experience of being in hospital which will differ amongst patients and their relatives. The points of reference in a child's and adolescent's life are replaced by pale walls, invasive medical procedures, medication and machinery, new words and phrases and the sensation of pain and suffering changing the

The hospitalisation of children may be considered as a potentially traumatic event when the full complexity of the human dimension is not fully considered (Santa Roza, 1997). Generally, models of care still favour the disease and view the child only as a sick body. We have to consider the diverse aspects involved in the process of hospital care when working with children, everything from the presentation of physical space to treatment routines, so

Bearing this in mind, we observe an increasing concern with the physical environment of hospitals and health centres, especially in pediatric wards. However, it is still common in hospitals and health centres to find the presence of unwelcoming and stressful stimuli. Unfamiliar and noisy equipment, a plethora of monitors with artificial lights, pipes and tubes and needles and tweezers comprise, in general, a threatening and unfamiliar setting. With the evolution of technology, and this is not a criticism, merely an observation, some hospital wards nowadays resemble spaceships, both architecturally and in terms of the complexity of equipment. This is due to advancements in diagnostic and therapeutic procedures, modern criterias of optimising resources, and newly discovered diseases, microorganisms and consequent treatments. However, this has led to an increased concern with creating healthcare spaces separate from society, isolating the infirm and setting the hospital

In contrast, in economically disadvantaged areas, it is still common to find areas being used as pediatric wards which previously had been intended for use by another clientele, or still further, had been intended for completely different purposes. This may involve places with no windows or natural light, only cold light and few objects which remind you that this is a

The importance of windows to the outside world is discussed in the work of Antunes (1989), where he says, irrespective of what a patient sees, it can be a landscape, cars, people, they see what does not exist in the hospital, a life full of movement and they are reminded of the temporary suspension of their freedom and autonomy as a result of hospitalisation. In the case of infant hospitalisation it is not only the patient who is subject to the architecture of the hospital. The accompanying person, usually the mother, is also hospitalised together with the child and ends up feeling "trapped" in an environment which sometimes appears far

This can contribute to augmenting the feeling of anxiety caused by the concern for the sick child and as well as for other related situations, such as concern for another child who remained at home, the abandoned job, the lack of support from a partner or family. All of these questions will be reflected in the relationship established between the child and their

(Mitre, 2006; 286).

space for children.

removed from everyday life.

everyday routines of these patients (Mitre, 2006).

as to avoid iatrogenesis (Santa Roza, 1997).

in areas outside of cities apart from everyday life (Antunes, 1989).

Similarly, the notions of time and reversibility are still under construction. Because of this, children often find it difficult to understand why it is necessary for them to have to undergo certain treatment which they sometimes associate with discipline and punishment (Santa Roza, 1997).

Often, even simple activities like playing with other children or siblings can become compromised. This may occur because of limitations arising from the intense routine of treatment, the care taken when in contact with other people (avoidance of trauma or bacteria) or the parents fears in relation to any other eventuality that they think threatens the health (and consequentially the life) of their children.

At school age, between the ages of six to twelve, the child will gradually become increasingly mature for their physical, intellectual and social condition. It is a phase of investment in physical activities and of greater socialisation. However, sufferers of chronic conditions may find themselves unable to participate in conventional social interaction and banter, which gives rise to the possible loss of friendship ties and changes in familial relationships. Further, the comprehension of death which chronic disease brings with it becomes more accessible through language and abstract content (Muriel et. al., 2011).

Amongst adolescents, who experience a phase characterised by the involvement of formal identification, an appreciation of more abstract aspects through a greater intellectual and emotional contribution, the experience of chronic disease can place them in conflict with their desire to live a more autonomous life and the dependency imposed on them by their chronic condition (Muriel et. al., 2011).

In all of these phases, it is important to point out that school should be considered as a primary partner in this process, which implies the availability and time to receive children with special requirements, for example, those who have had tracheotomies, gastrostomies or colostomies, administered food absences due to prolonged periods of treatment, the possible structural and architectural barriers and the relationship with other children.

However, school may also represent a challenge for children with chronic diseases due to the fact that it may expose children to more vulnerable situations, to being stigmatised by their colleagues and even bullying. The corporal changes entailed as a result of chronic diseases may provoke changes in body-image, the generation of feelings of inferiority, depression and embarrassment from the perception that they are different from their peers (Castro & Moreno-Jiménez, 2007)

Because of this, it is important to point out that the monitoring of children with chronic diseases involves knowledge from various disciplines. The participation of different healthcare professionals aside from doctors, psychologists, social-workers, occupational therapists, physiotherapists, and speech-therapists is fundamental.

Another important aspect of treatment, frequent in the lives of chronically diseased children, is hospitalisation, whether due to the deterioration of the patient or as a strategy for administering specific medication and procedures. Regarding the hospitalisatision of a child or adolescent, in general, what is observed is conformation of this delicate moment for the family requiring a reconfiguration of the everyday life and the assimilation of the disease which may also induce subjective changes. At the moment of hospitalisation, the experience for the pediatric patient is marked by the rupture from the everyday routines of school,

Similarly, the notions of time and reversibility are still under construction. Because of this, children often find it difficult to understand why it is necessary for them to have to undergo certain treatment which they sometimes associate with discipline and punishment (Santa

Often, even simple activities like playing with other children or siblings can become compromised. This may occur because of limitations arising from the intense routine of treatment, the care taken when in contact with other people (avoidance of trauma or bacteria) or the parents fears in relation to any other eventuality that they think threatens

At school age, between the ages of six to twelve, the child will gradually become increasingly mature for their physical, intellectual and social condition. It is a phase of investment in physical activities and of greater socialisation. However, sufferers of chronic conditions may find themselves unable to participate in conventional social interaction and banter, which gives rise to the possible loss of friendship ties and changes in familial relationships. Further, the comprehension of death which chronic disease brings with it becomes more accessible through language and abstract content (Muriel et. al., 2011).

Amongst adolescents, who experience a phase characterised by the involvement of formal identification, an appreciation of more abstract aspects through a greater intellectual and emotional contribution, the experience of chronic disease can place them in conflict with their desire to live a more autonomous life and the dependency imposed on them by their

In all of these phases, it is important to point out that school should be considered as a primary partner in this process, which implies the availability and time to receive children with special requirements, for example, those who have had tracheotomies, gastrostomies or colostomies, administered food absences due to prolonged periods of treatment, the possible

However, school may also represent a challenge for children with chronic diseases due to the fact that it may expose children to more vulnerable situations, to being stigmatised by their colleagues and even bullying. The corporal changes entailed as a result of chronic diseases may provoke changes in body-image, the generation of feelings of inferiority, depression and embarrassment from the perception that they are different from their peers

Because of this, it is important to point out that the monitoring of children with chronic diseases involves knowledge from various disciplines. The participation of different healthcare professionals aside from doctors, psychologists, social-workers, occupational

Another important aspect of treatment, frequent in the lives of chronically diseased children, is hospitalisation, whether due to the deterioration of the patient or as a strategy for administering specific medication and procedures. Regarding the hospitalisatision of a child or adolescent, in general, what is observed is conformation of this delicate moment for the family requiring a reconfiguration of the everyday life and the assimilation of the disease which may also induce subjective changes. At the moment of hospitalisation, the experience for the pediatric patient is marked by the rupture from the everyday routines of school,

structural and architectural barriers and the relationship with other children.

therapists, physiotherapists, and speech-therapists is fundamental.

the health (and consequentially the life) of their children.

chronic condition (Muriel et. al., 2011).

(Castro & Moreno-Jiménez, 2007)

Roza, 1997).

friends, family, peers and games. In general, "the activity and freedom characteristic of childhood are replaced by passivity, leaving few options for the child to make choices" (Mitre, 2006; 286).

This change produces an estrangement from the experience of being in hospital which will differ amongst patients and their relatives. The points of reference in a child's and adolescent's life are replaced by pale walls, invasive medical procedures, medication and machinery, new words and phrases and the sensation of pain and suffering changing the everyday routines of these patients (Mitre, 2006).

The hospitalisation of children may be considered as a potentially traumatic event when the full complexity of the human dimension is not fully considered (Santa Roza, 1997). Generally, models of care still favour the disease and view the child only as a sick body. We have to consider the diverse aspects involved in the process of hospital care when working with children, everything from the presentation of physical space to treatment routines, so as to avoid iatrogenesis (Santa Roza, 1997).

Bearing this in mind, we observe an increasing concern with the physical environment of hospitals and health centres, especially in pediatric wards. However, it is still common in hospitals and health centres to find the presence of unwelcoming and stressful stimuli. Unfamiliar and noisy equipment, a plethora of monitors with artificial lights, pipes and tubes and needles and tweezers comprise, in general, a threatening and unfamiliar setting.

With the evolution of technology, and this is not a criticism, merely an observation, some hospital wards nowadays resemble spaceships, both architecturally and in terms of the complexity of equipment. This is due to advancements in diagnostic and therapeutic procedures, modern criterias of optimising resources, and newly discovered diseases, microorganisms and consequent treatments. However, this has led to an increased concern with creating healthcare spaces separate from society, isolating the infirm and setting the hospital in areas outside of cities apart from everyday life (Antunes, 1989).

In contrast, in economically disadvantaged areas, it is still common to find areas being used as pediatric wards which previously had been intended for use by another clientele, or still further, had been intended for completely different purposes. This may involve places with no windows or natural light, only cold light and few objects which remind you that this is a space for children.

The importance of windows to the outside world is discussed in the work of Antunes (1989), where he says, irrespective of what a patient sees, it can be a landscape, cars, people, they see what does not exist in the hospital, a life full of movement and they are reminded of the temporary suspension of their freedom and autonomy as a result of hospitalisation. In the case of infant hospitalisation it is not only the patient who is subject to the architecture of the hospital. The accompanying person, usually the mother, is also hospitalised together with the child and ends up feeling "trapped" in an environment which sometimes appears far removed from everyday life.

This can contribute to augmenting the feeling of anxiety caused by the concern for the sick child and as well as for other related situations, such as concern for another child who remained at home, the abandoned job, the lack of support from a partner or family. All of these questions will be reflected in the relationship established between the child and their

Infantile Hospitalisation and Chronic Disease 245

For child sufferers of chronic disease and/or serious clinical conditions the situation is made worse because, in general, hospitalisations occur frequently and for certain children the hospital is the everyday routine. Some patients are hospitalised several times a year whilst others may stay in hospital for months on end. There are still those patients who come and go with such frequency that they begin to spend more time in the hospital than at

It is common to know the seriousness of the condition even if it has not already been clearly stated. The concern with death exists and manifests itself in different ways. Some children

Kudo & Pierri (1993) point out that amongst the various factors which directly influence the way in which a child will react to the process of hospitalisation are; the type of and degree of the affective bond established between mother-child before being hospitalised, the child's personality, the length of stay and the attitude of hospital staff towards them and the child's

Gonzaga & Arruda (1998) highlight, based upon various interviews with hospitalised children, that care can be offered by various people during the administration of services but that the action of one doesn't minimise the effects of the others but instead the benefits are congregated. The different actors can become sources of care and of feeling cared for. However, examples of a lack of care were also mentioned including attitudes of disinterest shown by healthcare professionals (doctors and nurses), not executing procedures to alleviate pain or the execution of procedures in a cold and mechanical manner without due respect and understanding towards the condition and sensitivity of pain. All of these actions contribute to the increased anguish and stress that the hospitalised patient experiences.

It is important to note that the introduction of play and recreational activities presented positive results about the experience of infant hospitalisation. Considering that playing is a fundamental childhood activity it should also be present during the period of hospitalisation. Its absence can lead to the impairment of motor, cognitive, perceptive and

Play places the hospitalised child in a similar position to other children instead of the difference imposed on them by chronic disease (Mitre, 2004). It is an activity which furthers and supports the creation of alliances and interactions amongst children, carers and healthcare professionals allowing for the construction of a new social network whilst also helping to diminish the sensations of isolation and solitude that hospitalisation causes (Mitre, 2000). Also, in the child-carer relationship, play can help reconstruct ties which have become fragmented due to the familial breakdown caused by the illness (Mitre & Gomes,

Play and recreational activity also makes possible the expression of feelings, ideas, fears, affections and habits. Because play is something which belongs to an individual, social and cultural repertoire, it is conducive to the child identifying with familiar elements and

To value and stimulate play as a possible means of self-expression is to recognise that if you work with children it is necessary to respect the uniqueness and specific needs of each child. Thus, play in hospital can be considered as a democratic place where individual experiences are valued and the possibility of choice and the exercise of autonomy exist (Mitre, 2006).

situations whilst in the hospital environment (Mitre, 2006).

joke about this whilst others pass comments about other children who have died.

home.

age.

2004).

emotional functions. (Mitre, 2006).

carer, a relationship which, principally during hospitalisation, needs to be capable of providing the necessary support for the child experiencing this period (Mitre, 2000).

Compounding hospitalisation still further, the child is subjected to situations in which they do not have any choice. Despite the necessity and effectiveness of hospitalisations the child is extremely susceptible to experiences which can cause stress and suffering.

The feeling of discomfort and pain is one of the characteristics which may accompany the hospitalised child. This is both connected to the clinical condition of the patient, which is presented through painful symptoms causing discomfort, as well as certain medical procedures. The procedure may be a simple puncture, present in almost a hundred per cent of hospitalised children because of the need for effective and immediate medication, or other equally invasive procedures such as the insertion of different tubes to drain various bodily fluids and gasses, the use of catheters or other probes (Mitre, 2000). Depending on the child's age or clinical condition the child is unable to verbalise these feelings.

The simplest everyday routines are changed due to the fact of hospitalised. The hours of the day change, sometimes sleep is interrupted by the routines of the ward, having to constantly take temperatures, blood pressure, listening for respiratory and circulatory problems and the taking of medication.

Feeding habits and hygiene routines change as well. Sometimes food is restricted (or even temporarily suspended) depending on the clinical condition of the child or the particular procedure (examinations, intravenous procedures and punctures and surgery amongst others). Hygiene habits may change depending on the time and the place, some patients are required to make use of probes or even have to resort to using nappies. In certain cases patients have to be bathed in bed which can lead to discomfort and embarrassment especially with older children. Moreover, in some places, generally public hospital wards, many children and their families and friends have to share the same space without any privacy (Mitre, 2000).

Besides all this, during hospitalisation the child is kept away from their friends, family, toys and school; ultimately, their life. This period if often experienced by the child as a gap in their life and as if everything appears to be in parenthesis. Everyday life appears so distant that some patients lose their notions of time and space. Once, a child asked if the hospital had an exit door and elevator to descend to the street. For him, there only appeared to be an entrance (Mitre, 2000).

Santa Roza (1997) describes how in this environment the child experiences situations which, even when they don't constitute a new experience (as in the case of repeated hospital admissions), may still sometimes be perceived as frightening. During hospitalisation, the child begins to live intensely with the sliding fortunes of their body, experiencing their suffering, the suffering of their family and of other children. Sometimes they are present to witness death; other times, they fear their own. Fear, anxiety and anguish accompany the hospitalisation process. In general, the child is unable to comprehend why they have to pass through these unknown experiences which produce fear. This situation may stimulate fantasies and thoughts about guilt or punishment as well as the fear of abandonment and death.

carer, a relationship which, principally during hospitalisation, needs to be capable of

Compounding hospitalisation still further, the child is subjected to situations in which they do not have any choice. Despite the necessity and effectiveness of hospitalisations the child

The feeling of discomfort and pain is one of the characteristics which may accompany the hospitalised child. This is both connected to the clinical condition of the patient, which is presented through painful symptoms causing discomfort, as well as certain medical procedures. The procedure may be a simple puncture, present in almost a hundred per cent of hospitalised children because of the need for effective and immediate medication, or other equally invasive procedures such as the insertion of different tubes to drain various bodily fluids and gasses, the use of catheters or other probes (Mitre, 2000). Depending on

The simplest everyday routines are changed due to the fact of hospitalised. The hours of the day change, sometimes sleep is interrupted by the routines of the ward, having to constantly take temperatures, blood pressure, listening for respiratory and circulatory problems and

Feeding habits and hygiene routines change as well. Sometimes food is restricted (or even temporarily suspended) depending on the clinical condition of the child or the particular procedure (examinations, intravenous procedures and punctures and surgery amongst others). Hygiene habits may change depending on the time and the place, some patients are required to make use of probes or even have to resort to using nappies. In certain cases patients have to be bathed in bed which can lead to discomfort and embarrassment especially with older children. Moreover, in some places, generally public hospital wards, many children and their families and friends have to share the same space without any

Besides all this, during hospitalisation the child is kept away from their friends, family, toys and school; ultimately, their life. This period if often experienced by the child as a gap in their life and as if everything appears to be in parenthesis. Everyday life appears so distant that some patients lose their notions of time and space. Once, a child asked if the hospital had an exit door and elevator to descend to the street. For him, there only appeared to be an

Santa Roza (1997) describes how in this environment the child experiences situations which, even when they don't constitute a new experience (as in the case of repeated hospital admissions), may still sometimes be perceived as frightening. During hospitalisation, the child begins to live intensely with the sliding fortunes of their body, experiencing their suffering, the suffering of their family and of other children. Sometimes they are present to witness death; other times, they fear their own. Fear, anxiety and anguish accompany the hospitalisation process. In general, the child is unable to comprehend why they have to pass through these unknown experiences which produce fear. This situation may stimulate fantasies and thoughts about guilt or punishment as well as the fear of abandonment and

providing the necessary support for the child experiencing this period (Mitre, 2000).

is extremely susceptible to experiences which can cause stress and suffering.

the child's age or clinical condition the child is unable to verbalise these feelings.

the taking of medication.

privacy (Mitre, 2000).

entrance (Mitre, 2000).

death.

For child sufferers of chronic disease and/or serious clinical conditions the situation is made worse because, in general, hospitalisations occur frequently and for certain children the hospital is the everyday routine. Some patients are hospitalised several times a year whilst others may stay in hospital for months on end. There are still those patients who come and go with such frequency that they begin to spend more time in the hospital than at home.

It is common to know the seriousness of the condition even if it has not already been clearly stated. The concern with death exists and manifests itself in different ways. Some children joke about this whilst others pass comments about other children who have died.

Kudo & Pierri (1993) point out that amongst the various factors which directly influence the way in which a child will react to the process of hospitalisation are; the type of and degree of the affective bond established between mother-child before being hospitalised, the child's personality, the length of stay and the attitude of hospital staff towards them and the child's age.

Gonzaga & Arruda (1998) highlight, based upon various interviews with hospitalised children, that care can be offered by various people during the administration of services but that the action of one doesn't minimise the effects of the others but instead the benefits are congregated. The different actors can become sources of care and of feeling cared for. However, examples of a lack of care were also mentioned including attitudes of disinterest shown by healthcare professionals (doctors and nurses), not executing procedures to alleviate pain or the execution of procedures in a cold and mechanical manner without due respect and understanding towards the condition and sensitivity of pain. All of these actions contribute to the increased anguish and stress that the hospitalised patient experiences.

It is important to note that the introduction of play and recreational activities presented positive results about the experience of infant hospitalisation. Considering that playing is a fundamental childhood activity it should also be present during the period of hospitalisation. Its absence can lead to the impairment of motor, cognitive, perceptive and emotional functions. (Mitre, 2006).

Play places the hospitalised child in a similar position to other children instead of the difference imposed on them by chronic disease (Mitre, 2004). It is an activity which furthers and supports the creation of alliances and interactions amongst children, carers and healthcare professionals allowing for the construction of a new social network whilst also helping to diminish the sensations of isolation and solitude that hospitalisation causes (Mitre, 2000). Also, in the child-carer relationship, play can help reconstruct ties which have become fragmented due to the familial breakdown caused by the illness (Mitre & Gomes, 2004).

Play and recreational activity also makes possible the expression of feelings, ideas, fears, affections and habits. Because play is something which belongs to an individual, social and cultural repertoire, it is conducive to the child identifying with familiar elements and situations whilst in the hospital environment (Mitre, 2006).

To value and stimulate play as a possible means of self-expression is to recognise that if you work with children it is necessary to respect the uniqueness and specific needs of each child. Thus, play in hospital can be considered as a democratic place where individual experiences are valued and the possibility of choice and the exercise of autonomy exist (Mitre, 2006).

Infantile Hospitalisation and Chronic Disease 247

important as the experiences of carers. The right of children to express themselves can provide valuable information for healthcare practices which may be reconsidered in favour

Beginning with this understanding, it is possible to construct relationships within healthcare which will not be guided by the subjection and control of the patient, but where you can affirm the capacity of the paediatric patient to express, create and reinvent standards which make possible for autonomously administering the margin of risk to life, amplifying capacities for coping with the disease together with the most important relationships.

The recognition, on the part of healthcare teams, of the conditions in which the body is encountered, the subjectivity of the patient, is the first step towards incorporating a new understanding of the patient, taking into consideration the factors involved in the patient's

Taken as a proposal to consider care as a value (Pinheiro, 2007), understanding it as an integral action which has meanings related to the understanding of healthcare such as the right to medical and other specialised treatments, allows the patient to actively participate in

Healthcare begins when a dialogical relationship between the patient and healthcare professionals is initiated, which transcends the simple game of the active questions of healthcare professionals and the passive responses of patients towards the construction of a space of exchanges, where the medical knowledge of the doctor incorporates itself into the lived experiences of the individual. With this, it is possible to establish relationships which are guided by partnership between people which have the objective of finding the shortest

Caprara e Franco (1999) emphasise the need to overcome both the informative model that relays information and the paternalistic model which protects the patient from their own disease, towards a model of communication which includes other important actors in the life of the patient. It is an overcoming which requires a change in attitude and understanding about the healthcare process and the place of the other within this

For Deslandes (2004a), the possibilities of communication are related to the social position which individuals occupy. In the relationship between doctors and patients there exists,

However, the construction of an active communication begins by recognising the place of the patient as that of a subject in the relationship. According to Deslandes (2004b), the necessary movement in order to change this logic of attention within healthcare not only incorporates a new understanding of patients and their lived experiences, but also a change which observes the organisational culture in which are concentrated the relationships of knowledge-power, gender and social status. These are these factors present in the organisational culture which are able to feed certain types of relationships between the

Healthcare taken as a value, (Pinheiro, 2007) proposes that we recognise the ethos of the cared for and of the provider of care, which requires including in the relationship the

historically, a differentiation between the place and value of their speech.

of a more comprehensive and friendly service.

the decisions taken in regard to the conduct of their own case.

route to the restoration of health.

relationship.

actors in institutions.

life.
