**2. Chronic disease in childhood**

By chronic disease is understood those diseases that present prolonged periods of suffering, are incurable, and have profound effects on the everyday life of suffers, affecting social relations, the family and health institutions (Canesqui, 2007). Chronic diseases during infancy may be considered as events which have a biological, psychological and/or cognitive basis, with a prolonged periods of suffering which may produce limitations in functions or activities, a loss of social relationships, pharmaceutical dependency, special dietary requirements, medical technology, specialised equipment, personal assistance,

education, sport, leisure, professional training, culture, dignity, respect, freedom and family

Five years later, Brazil promulgated resolution 41 on October 13th 1995 which was directed specifically towards the Rights of hospitalised children and adolescents. The resolution is composed of 20 rights including protection, care, use of procedures to minimise pain and the recognition of pediatric patients as subjects with rights within institutional healthcare. However, it is not possible to discern the same concern and legal protections in relation to children and adolescents in different countries. The situations of war, famine, poverty and malnutrition produce refugees, orphans, and the displaced children of territorial and

The path to the concrete realisation of such rights is long and faced with many obstacles, which includes the way in which children are viewed and understood by adults – subjects

The developmental approach to the child, of being in a process of formation which is incomplete and therefore requiring of norms and standards so that the social and cultural debt of becoming adult can be paid off through education and through the adult figure as a spokesperson for the child is criticised by Castro (2001), which brings to light a new concept

In his theory, Castro (2001) emphasises the importance of legitimising children as being capable of exercising their rights through their capacity for action within and understanding of the world. Both adults and children become perceived and understood as belonging to

Qvortrup (2007) demonstrates in his study that the attitudes of society in relation to children are ambiguous because whilst at the same time as establishing rules and rights to protect children, society departs from these very same rules and rights in relation to adults. Without belittling the importance of ensuring these rights and protection to children, since childhood and politics are inextricably linked, present criticism and construction focuses on the movements of children only as edification materials for future generations and training as

However, this critical task becomes a great challenge when the conditions of chronically ill hospitalised pediatric patients, who find themselves with reduced levels of autonomy, are dependent upon technology, relatives, social support networks and the performance of

By chronic disease is understood those diseases that present prolonged periods of suffering, are incurable, and have profound effects on the everyday life of suffers, affecting social relations, the family and health institutions (Canesqui, 2007). Chronic diseases during infancy may be considered as events which have a biological, psychological and/or cognitive basis, with a prolonged periods of suffering which may produce limitations in functions or activities, a loss of social relationships, pharmaceutical dependency, special dietary requirements, medical technology, specialised equipment, personal assistance,

different age-group categories with different roles and performances in society.

who need to be represented by another voice in order to be heard.

and community".

of childhood.

political conflicts on a daily basis.

political subjects (Qvortrup, 2007).

professional health workers, are assumed.

**2. Chronic disease in childhood** 

comprehensive healthcare which not only includes medical attention but also other professional healthcare assistance such as psychologists, occupational therapists, nurses and physiotherapists amongst others, which need to be accommodated in different ways in the various spaces of sociability (Silva, 2001).

According to the World Health Organisation (WHO, 2003), a chronic condition constitutes a health problem which demands permanent health care and management over prolonged periods of time, even years or decades. Understanding chronic diseases involves addressing a vast array of diseases including both transferable diseases (HIV/AIDS) and nontransferable diseases (cardio-vascular, cancer and diabetes) and physical disabilities (amputations, blindness, and chronic joint diseases) which, although seemingly distinct from each other, all require permanent care.

Chronic diseases have assumed a new place in healthcare in light of the available technological support and scientific advances which have led to increased survival rates for this group of pathologies. There has been a demographic and epidemiological transition in pediatric care which can be characterised by the increase of chronic cases of overweight patients, infant obesity, reducing malnutrition and a reduction in infant mortality rates between the ages of two months and five years, actions aimed at increasing breast feeding, access to pre natal care, treating pneumonia, diarrhoea and the administration of vaccines (Moreira & Goldani, 2010).

This has had a profound impact on hospital care and point towards the construction of a new model of healthcare which should be expanded to included the prevention and treatment of infant diseases to guarantee the health of individuals so that they can grow and develop. The child is now dependent on technology – an increased population has grown quantitatively and now demands specialised treatments and services (Moreira & Goldani, 2010).

The wide variety of rare infant diseases which are genetic in origin and their subsequent survival is dependent upon both the type of healthcare offered and the available technology. The technologically dependent child, besides demanding new services, establishes a permanent relationship with the various stages of assistance. There are children who are born with chronic diseases, who are assisted by neonatology and in order to survive are transferred to pediatric wards. Institutional processes and transfers of responsibilities between professionals are developed as well appropriating hospital space for family members due to the changes involved in going from being part of life to being hospitalised.

Against this background of demographic and epidemiological changes, pediatric practices were being developed which included diagnostics and the administration of both human and financial resources in order to improve the assistance and healthcare given to patients (Moreira & Goldani, 2010).

However, the experience of chronic disease has at its core the uncertainty of future life and affects not only medical conduct, but above all, the course of the life of the patients who, in many cases, find themselves unable to plan long term for the future (Adam & Herzlich, 2001). Furthermore, chronic disease can alter our everyday routines and habits, which in the case of pediatric patients includes going to school, their circle of friends, visiting parks and practicing sports.

Infantile Hospitalisation and Chronic Disease 241

(Charmaz, 1983). Considering that a child suffering from a chronic condition can become a chronic adult, it becomes essential that the individual stages of life and their respective experiences receive special attention in the context of hospitalisation and healthcare. For Moreira & Goldani, (2010: 324) *"health conditions in early life are strong determinants of adult* 

For these authors the field needs more profound and systematic studies which are not limited to personal experiences, case studies, expert recommendations or small clinical trials

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

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

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

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

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.

which have made the child a "*therapeutic orphan*" (Moreira & Goldani, 2010: 325).

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

reflecting upon the attention paid to the health of chronically diseased children.

*health and this has not received sufficient attention"*.

environment and themselves (Muriel et. al. 2011).

**development** 

outside world

in their lives.

The diagnosis of chronic disease alters the everyday routine of the patient and their family, from initial investigation until confirmation of diagnosis, at which point patients begin to adapt to their new circumstances and learn to deal with the suffering, possible limitations and fear of dying (Pierre et. al., 1991).

Often, due to diagnostic examinations, this routine can even begin intrauterine with certain types of disability or disease being detected and corrective procedures initiated, for example in cases of spina bifida and heart disease. At other times, the baby can present signs or symptoms of chronic disease immediately from birth, thus initiating diagnostic procedures which can interfere with the construction of the mother-child bond and the establishment of the baby's routine.

Thus, the experience of living with chronic disease from birth implies a series of changes to the lives of the baby and family. Discipline is amongst the numerous challenges faced in everyday life, regardless of whether or not treatments require medication. This implies amongst other concerns, the frequency with which patients have to undergo examinations, consultations, medical procedures and hospitalisation (Vieira & Lima, 2002). Besides dealing with the behaviour and conduct of different healthcare professionals, chronic diseases can cause changes in routine which range from those effecting the family, such as those responsible becoming unemployed in order to care for the patient, having to move home in order to be closer to hospitals and health centres, structural changes to the house, to problems at school whether due to architectural barriers, adaptation or rejection of the pedagogical model or rejection by peers.

The constant concern with the care of the child from infancy becomes so great that it can interfere with the spontaneity of maternal care. Depending on the severity of the situation, accurate knowledge of the disease, the quality of interaction with healthcare staff and previous experience, the mother in question may think that she is incapable of providing the necessary care for her baby. The mother wrongly assumes that care is only a technical competence. Thus, it is fundamental that healthcare professionals are attentive to the need of encouraging and stimulating the participation of the mother, not only during the routine of medical treatments but also in nurturing the baby (Winnicott, 1988).

The chronic condition is presented as a delicate reality, becoming a private personal experience that the other does not access, dependent upon constant communication between the subjects. Because it is a private experience of the subject, it is not easily established making the job of deciphering chronic pain necessary amongst healthcare professionals (Baszanger, 1991).

The manner in which the child and the family face chronic disease is associated with the organisation and interaction of the family. The support of family and social ties, support networks for the family and protection of patients serve as a social fabric which permits a greater range for management of encounters and constructing ties which can ensure the well-being of patients (Adam & Herlizch, 2001; Viana et. al. 2007)

The physical pain, the psychic suffering and the deleterious effects of medical procedures are not always taken into consideration in healthcare practices. A narrow view of the experience of the chronic condition, which is defined as only discomfort and/or physical limitation, ignores or minimises the greater meaning and experience of the pediatric patient

The diagnosis of chronic disease alters the everyday routine of the patient and their family, from initial investigation until confirmation of diagnosis, at which point patients begin to adapt to their new circumstances and learn to deal with the suffering, possible limitations

Often, due to diagnostic examinations, this routine can even begin intrauterine with certain types of disability or disease being detected and corrective procedures initiated, for example in cases of spina bifida and heart disease. At other times, the baby can present signs or symptoms of chronic disease immediately from birth, thus initiating diagnostic procedures which can interfere with the construction of the mother-child bond and the establishment of

Thus, the experience of living with chronic disease from birth implies a series of changes to the lives of the baby and family. Discipline is amongst the numerous challenges faced in everyday life, regardless of whether or not treatments require medication. This implies amongst other concerns, the frequency with which patients have to undergo examinations, consultations, medical procedures and hospitalisation (Vieira & Lima, 2002). Besides dealing with the behaviour and conduct of different healthcare professionals, chronic diseases can cause changes in routine which range from those effecting the family, such as those responsible becoming unemployed in order to care for the patient, having to move home in order to be closer to hospitals and health centres, structural changes to the house, to problems at school whether due to architectural barriers, adaptation or rejection of the

The constant concern with the care of the child from infancy becomes so great that it can interfere with the spontaneity of maternal care. Depending on the severity of the situation, accurate knowledge of the disease, the quality of interaction with healthcare staff and previous experience, the mother in question may think that she is incapable of providing the necessary care for her baby. The mother wrongly assumes that care is only a technical competence. Thus, it is fundamental that healthcare professionals are attentive to the need of encouraging and stimulating the participation of the mother, not only during the routine of

The chronic condition is presented as a delicate reality, becoming a private personal experience that the other does not access, dependent upon constant communication between the subjects. Because it is a private experience of the subject, it is not easily established making the job of deciphering chronic pain necessary amongst healthcare professionals

The manner in which the child and the family face chronic disease is associated with the organisation and interaction of the family. The support of family and social ties, support networks for the family and protection of patients serve as a social fabric which permits a greater range for management of encounters and constructing ties which can ensure the

The physical pain, the psychic suffering and the deleterious effects of medical procedures are not always taken into consideration in healthcare practices. A narrow view of the experience of the chronic condition, which is defined as only discomfort and/or physical limitation, ignores or minimises the greater meaning and experience of the pediatric patient

medical treatments but also in nurturing the baby (Winnicott, 1988).

well-being of patients (Adam & Herlizch, 2001; Viana et. al. 2007)

and fear of dying (Pierre et. al., 1991).

pedagogical model or rejection by peers.

the baby's routine.

(Baszanger, 1991).

(Charmaz, 1983). Considering that a child suffering from a chronic condition can become a chronic adult, it becomes essential that the individual stages of life and their respective experiences receive special attention in the context of hospitalisation and healthcare. For Moreira & Goldani, (2010: 324) *"health conditions in early life are strong determinants of adult health and this has not received sufficient attention"*.

For these authors the field needs more profound and systematic studies which are not limited to personal experiences, case studies, expert recommendations or small clinical trials which have made the child a "*therapeutic orphan*" (Moreira & Goldani, 2010: 325).
