**1. Introduction**

234 Complementary Pediatrics

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This chapter attempts to characterise the process of chronic disease and infant hospitalisation, the relationship between healthcare professionals, children and their families, in addition to considering the implications which chronic disease has throughout the life of the child and their family. The chapter also considers the changes in the field of pediatrics, its gaps and shortcomings and its position in the biomedical field, defining technical and scientific principles.

The chapter intends to contribute to the construction of knowledge within pediatrics in the face of contemporary concerns and reflections about chronic disease which can serve as a reference point for the promotion of healthcare strategies, principally specialised hospital care, for those children in hospital care.

With the evolution of diagnostic methods and new treatment methods there has been a great deal of discussion and research into chronic disease and its implications for the lives of child suffers. Chronic disease effects millions of people throughout the world, however, it is fundamental that we reflect upon the peculiarities involved when this experience occurs during childhood. To be able to speak of chronic illness and of infant hospitalisation, it is necessary to locate this stage of the child's development, which we refer to as childhood, whilst also considering the role which children occupy in contemporary society from the vantage point of healthcare.

Until the 18th Century children were the responsibility of the family which ensured the transmission of physical life, family possessions and names, but had no specific concern with educational. The State and charity were utilised only in cases of abandonment (Aries, 2009).

However, from the Renaissance to the Enlightenment the concern with children's health intensified, beginning from a sense of conservation and protection of childhood originating with mercantilism, and later, to capitalists with the intention of strengthening and expanding armies and a necessity for abundant labour power. Educational performance, which began to take centre stage in shaping children, was dominated by vigilance and discipline and was concerned with morality and a sense of responsibility. Likewise, the Family was elected as the principle cell in which to focus hygiene, nutrition and control (Aries, 2009).

Infantile Hospitalisation and Chronic Disease 237

feelings amongst parents who assessed their children as being excessively sad. For professional healthcare workers it represented extra work re-stabilising and re-establishing

With the subsequent inclusion of the family and/or the companion in the universe of hospitalisation, a change of focus was required from professional health workers, which had previously concentrated solely on the child and their pathology, in order to create a more comprehensive understanding of the condition of infant hospitalisation. Pediatric care once again came to have the family as its goal, which was considered as the primary unit of care, whilst not forgetting to take into account valued technological advances included within the

Considering the course which infant care has taken since the 18th century it is possible to see that not only were concerns diversified, but that there were also changes in practices of care,

Throughout the 20th Century, with the widening in scope of the role of medicine and increasing specialisation and technological development, infancy gained the same number of dedicated professionals as adults, composing a long list of healthcare professionals such as endocrinologists, neurologists, psychiatrists, infectologists and gastroenterologists

Moreover, it is not possible to approach this subject matter without taking into consideration Human rights. If before the Enlightenment the child was just another familial entity, the 20th Century has repositioned the child at the centre of Human rights legislation

The United Nations (UN) adopted The Geneva Declaration of the Rights of the Child for the first time in 1924. However, with the changes to the political landscape during this period, the theme achieved a greater impact with the Universal Declaration of Human Rights (UN, 1948), through which it became universally recognised, for the first time, that the child should be subject to special care and attention, as stated in item 2, of article 25 (XXV) "motherhood and childhood are entitled to special care and assistance. All children,

Later, with the Declaration of the Rights of the Child (UN, 1959), ten basic principles were established – the right of the child to special protection; to be given the opportunities and facilities necessary for healthy and harmonious development; access to the benefits of social security, including adequate nutrition, housing, recreation and medical services; to receive education and protection against all forms of negligence, cruelty and exploitation – becoming a landmark and guide for the performance of both public and private institutions

In Brazil, the federal constitution of 1988 establishes in article 227, the Rights of the child and the Statute of the Child and Adolescent (SCA, 1990) which regulated the article and was drafted based upon the International Instruments of Human Rights of the UN, and in particular, the Declaration of the Rights of the Child. Considered a landmark in Brazilian constitutional protection of children and adolescents, the SCA stipulates in article 4 that "It is the duty of the family, the community, society in general and public authorities to ensure, with absolute priority, the effective implementation of the right to life, health, nutrition,

whether born in or out of wedlock, shall enjoy the same social protection".

the child after the conclusion of the visit.

healthcare perspective (Collet & Rocha, 2004).

control, education, training and protection.

with the stated objective of protecting them.

amongst others.

and professionals.

Medicine fitted the function of guiding, controlling and instructing families and society with regard to treatments, clothing, toys, education and nutritional timetables, and was founded on the new knowledge of comprehensive childcare. A rational and scientific model emerged from within pediatric care providing the rules and norms for medical and educational practice towards children. (Rago, 1987; Zanoli & Merhy2001)

Childhood, as the object of study taken by medicine, focused its attention on the confluence of three privileged axes: high infant mortality rate, abandoned children and a repositioning of the doctor figure as central in the medicalisation of the family (Rago, 1987).

Raised to a privileged position of knowledge and understanding about the best ways to maintain a clean and healthy life, medicine now assumed the political role of recovering the trajectories of childhood, hitherto unproblematic, and began to the fulfil the task of intervening in private households.

In addition to education, impoverished and abandoned children were disciplined through professional institutions such as orphanages. They provided both discipline and new knowledge which was transmitted through the punitive and repressive model, restructuring both habits and customs (Rago, 1987).

The study of hygiene brought to social life new practices and norms of personal hygiene, familial hygiene and for the home, focusing principally on maintaining and sustaining healthy children and the formation of strong citizens, who would be able to work in the future. The relationship between childhood and adulthood was established and the way in which an individual had been treated during childhood came to be the main determinant for their future possibilities of a healthy adult life. Thus, hygiene became a central concern for governments and states in producing subjects and families and was directed towards protecting physical and emotional intimacy (Costa, 1983).

Later, children's health became harnessed to maternal health, originating in the binomial of mother-child. A proposal to protect the mother-child's health was developed, planned and implemented through specific programs and standards of healthcare. However, with this move towards preventative and communitarian medicine, a new proposal was presented focusing on comprehensive healthcare, both rationalising and hierarchical, establishing networks of hospital and outpatient services. There was a refocusing on the concepts of multiple causality and risk in the understanding of children's health. The fight against infant mortality was centred on discourses and practices directed towards understanding the social determinants of the health-disease process and of the necessity to expand assistance until adolescence. A shift occurred from focusing on childcare to focusing on disease, in which healthcare became organised and systematised into standards of care (Zanoli & Merhy, 2001).

An important characteristic of early pediatric hospitals is the absence of the mother or any other relative during the child's stay in hospital with the exception of official visiting hours. Contact, between healthcare teams and family members, was limited to passing on information during discharge, during visits and during more delicate procedures such as surgery.

During these moments of contact with the family, Winnicott (1982) highlights that whilst there were positives aspects for the child and their families they also generated mixed

Medicine fitted the function of guiding, controlling and instructing families and society with regard to treatments, clothing, toys, education and nutritional timetables, and was founded on the new knowledge of comprehensive childcare. A rational and scientific model emerged from within pediatric care providing the rules and norms for medical and educational

Childhood, as the object of study taken by medicine, focused its attention on the confluence of three privileged axes: high infant mortality rate, abandoned children and a repositioning

Raised to a privileged position of knowledge and understanding about the best ways to maintain a clean and healthy life, medicine now assumed the political role of recovering the trajectories of childhood, hitherto unproblematic, and began to the fulfil the task of

In addition to education, impoverished and abandoned children were disciplined through professional institutions such as orphanages. They provided both discipline and new knowledge which was transmitted through the punitive and repressive model, restructuring

The study of hygiene brought to social life new practices and norms of personal hygiene, familial hygiene and for the home, focusing principally on maintaining and sustaining healthy children and the formation of strong citizens, who would be able to work in the future. The relationship between childhood and adulthood was established and the way in which an individual had been treated during childhood came to be the main determinant for their future possibilities of a healthy adult life. Thus, hygiene became a central concern for governments and states in producing subjects and families and was directed towards

Later, children's health became harnessed to maternal health, originating in the binomial of mother-child. A proposal to protect the mother-child's health was developed, planned and implemented through specific programs and standards of healthcare. However, with this move towards preventative and communitarian medicine, a new proposal was presented focusing on comprehensive healthcare, both rationalising and hierarchical, establishing networks of hospital and outpatient services. There was a refocusing on the concepts of multiple causality and risk in the understanding of children's health. The fight against infant mortality was centred on discourses and practices directed towards understanding the social determinants of the health-disease process and of the necessity to expand assistance until adolescence. A shift occurred from focusing on childcare to focusing on disease, in which healthcare became organised and systematised into standards of care (Zanoli &

An important characteristic of early pediatric hospitals is the absence of the mother or any other relative during the child's stay in hospital with the exception of official visiting hours. Contact, between healthcare teams and family members, was limited to passing on information during discharge, during visits and during more delicate procedures such as

During these moments of contact with the family, Winnicott (1982) highlights that whilst there were positives aspects for the child and their families they also generated mixed

of the doctor figure as central in the medicalisation of the family (Rago, 1987).

practice towards children. (Rago, 1987; Zanoli & Merhy2001)

protecting physical and emotional intimacy (Costa, 1983).

intervening in private households.

both habits and customs (Rago, 1987).

Merhy, 2001).

surgery.

feelings amongst parents who assessed their children as being excessively sad. For professional healthcare workers it represented extra work re-stabilising and re-establishing the child after the conclusion of the visit.

With the subsequent inclusion of the family and/or the companion in the universe of hospitalisation, a change of focus was required from professional health workers, which had previously concentrated solely on the child and their pathology, in order to create a more comprehensive understanding of the condition of infant hospitalisation. Pediatric care once again came to have the family as its goal, which was considered as the primary unit of care, whilst not forgetting to take into account valued technological advances included within the healthcare perspective (Collet & Rocha, 2004).

Considering the course which infant care has taken since the 18th century it is possible to see that not only were concerns diversified, but that there were also changes in practices of care, control, education, training and protection.

Throughout the 20th Century, with the widening in scope of the role of medicine and increasing specialisation and technological development, infancy gained the same number of dedicated professionals as adults, composing a long list of healthcare professionals such as endocrinologists, neurologists, psychiatrists, infectologists and gastroenterologists amongst others.

Moreover, it is not possible to approach this subject matter without taking into consideration Human rights. If before the Enlightenment the child was just another familial entity, the 20th Century has repositioned the child at the centre of Human rights legislation with the stated objective of protecting them.

The United Nations (UN) adopted The Geneva Declaration of the Rights of the Child for the first time in 1924. However, with the changes to the political landscape during this period, the theme achieved a greater impact with the Universal Declaration of Human Rights (UN, 1948), through which it became universally recognised, for the first time, that the child should be subject to special care and attention, as stated in item 2, of article 25 (XXV) "motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection".

Later, with the Declaration of the Rights of the Child (UN, 1959), ten basic principles were established – the right of the child to special protection; to be given the opportunities and facilities necessary for healthy and harmonious development; access to the benefits of social security, including adequate nutrition, housing, recreation and medical services; to receive education and protection against all forms of negligence, cruelty and exploitation – becoming a landmark and guide for the performance of both public and private institutions and professionals.

In Brazil, the federal constitution of 1988 establishes in article 227, the Rights of the child and the Statute of the Child and Adolescent (SCA, 1990) which regulated the article and was drafted based upon the International Instruments of Human Rights of the UN, and in particular, the Declaration of the Rights of the Child. Considered a landmark in Brazilian constitutional protection of children and adolescents, the SCA stipulates in article 4 that "It is the duty of the family, the community, society in general and public authorities to ensure, with absolute priority, the effective implementation of the right to life, health, nutrition,

Infantile Hospitalisation and Chronic Disease 239

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

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

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

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 &

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

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

various spaces of sociability (Silva, 2001).

from each other, all require permanent care.

(Moreira & Goldani, 2010).

(Moreira & Goldani, 2010).

practicing sports.

Goldani, 2010).

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

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 political conflicts on a daily basis.

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

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 of childhood.

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

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 political subjects (Qvortrup, 2007).

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 professional health workers, are assumed.
