**4. Parental approach to chronic disease and the hospitalisation of the child**

Chronic disease in children and adolescents, besides bringing new variables into the lives of the patients, imposes on the parents the need for developing new routines and acquiring new knowledge about the conduct and the care of children.

According to Alves (2009), mothers who live often with the hospitalisation process of children learn to provide care and are able to supervise the work of providing assistance, judging if they are "right or wrong" in accordance with what they have learnt.

By exercising their role of providing care to the child, mothers have a function which permeates meanings in the universe of nursing, whilst the nurse is, in these cases, in a place which does not have clearly demarcated boundaries in the delivery of healthcare. This confusing and ambiguous situation can create conflicts and disagreements with regards to knowledge and information. However, the disposition of mothers to provide care should not be taken as a rule in the same way that it is not specialised care (Alves, 2009).

The development of care by carers, in general, does not form part of the same option. The experience of chronic disease, gradually, inserts them into the hospital routine where they learn and act. The permanent presence of companions imprints another dynamic in the assistance process, because it provides the opportunity to learn some new technical abilities and to amplify other knowledge about the functioning of the hospital and of therapeutic techniques (Lima, Rocha e Scochi, 1999).

The presence of the family within the context of the hospitalisation of children and adolescents represented an advance in the relationship between the users and the hospital space, but as an isolated initiative it didn't recognise or take into account the need to understand the dynamics involved in the process of chronic disease in children and adolescents. The presence of the carer needs to be tracked by a therapeutic project which integrates patient care because the carer is attached to assistance and meaning is related to the patient's disease.

As a vehicle for providing access to the knowledge of patients and carers, dialogue and guidelines are indispensable resources. The construction of a therapeutic project, which integrates knowledge and establishes performance guidelines within each stage of patient care, can be a great resource for structuring and organising more harmonious and coresponsible relationships.

At this point the ability and capacity for communication, dialogue and a host of other demands and opportunities for the autonomous expressions of the family, comes into play. Sharing the provision of care with carers requires the exercise of co-participation. A space for dialogue is needed which enables the different actors to express their doubts and feelings. This space can not be attached to the duration of time in hospital, but rather instituted as a means for the management of daily services.

The investment in the relationships between healthcare professionals, patients, and their carers, founded and guided by such factors as the initial contact and dialogue between patients and doctors, may empower the role and autonomy of children and their carers.

The appreciation of knowledge of paediatric patients about the process of chronic disease and the relationships which they experience within the context of hospitalisation are as

**4. Parental approach to chronic disease and the hospitalisation of the child**  Chronic disease in children and adolescents, besides bringing new variables into the lives of the patients, imposes on the parents the need for developing new routines and acquiring

According to Alves (2009), mothers who live often with the hospitalisation process of children learn to provide care and are able to supervise the work of providing assistance,

By exercising their role of providing care to the child, mothers have a function which permeates meanings in the universe of nursing, whilst the nurse is, in these cases, in a place which does not have clearly demarcated boundaries in the delivery of healthcare. This confusing and ambiguous situation can create conflicts and disagreements with regards to knowledge and information. However, the disposition of mothers to provide care should

The development of care by carers, in general, does not form part of the same option. The experience of chronic disease, gradually, inserts them into the hospital routine where they learn and act. The permanent presence of companions imprints another dynamic in the assistance process, because it provides the opportunity to learn some new technical abilities and to amplify other knowledge about the functioning of the hospital and of therapeutic

The presence of the family within the context of the hospitalisation of children and adolescents represented an advance in the relationship between the users and the hospital space, but as an isolated initiative it didn't recognise or take into account the need to understand the dynamics involved in the process of chronic disease in children and adolescents. The presence of the carer needs to be tracked by a therapeutic project which integrates patient care because the carer is attached to assistance and meaning is related to

As a vehicle for providing access to the knowledge of patients and carers, dialogue and guidelines are indispensable resources. The construction of a therapeutic project, which integrates knowledge and establishes performance guidelines within each stage of patient care, can be a great resource for structuring and organising more harmonious and co-

At this point the ability and capacity for communication, dialogue and a host of other demands and opportunities for the autonomous expressions of the family, comes into play. Sharing the provision of care with carers requires the exercise of co-participation. A space for dialogue is needed which enables the different actors to express their doubts and feelings. This space can not be attached to the duration of time in hospital, but rather

The investment in the relationships between healthcare professionals, patients, and their carers, founded and guided by such factors as the initial contact and dialogue between patients and doctors, may empower the role and autonomy of children and their carers.

The appreciation of knowledge of paediatric patients about the process of chronic disease and the relationships which they experience within the context of hospitalisation are as

instituted as a means for the management of daily services.

judging if they are "right or wrong" in accordance with what they have learnt.

not be taken as a rule in the same way that it is not specialised care (Alves, 2009).

new knowledge about the conduct and the care of children.

techniques (Lima, Rocha e Scochi, 1999).

the patient's disease.

responsible relationships.

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 of a more comprehensive and friendly service.

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 life.

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

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 route to the restoration of health.

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 relationship.

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

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 actors in institutions.

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

Infantile Hospitalisation and Chronic Disease 249

Finally, to highlight the contribution of Ayres (2005), in relation to the concept which he calls Projects for human happiness. For the author, this concept refers to the idea of lived experiences, positively valued, which are not dependent on a state of complete well-being in the life of the subjects. In cases of disease, these projects can be constructed from the various values and guidelines which orientate healthcare. He makes the salient point that happiness materialises in the lives of individuals through the construction of everyday life projects, a concept which can't be defined universally or as an external entity. Projects for human happiness are associated with the capacity to overcome obstacles and move in the direction

The way to construct, in healthcare, Projects for human happiness involves the evaluation of values which orientate the processes of chronic disease and healthcare, as much as in regards to the integration of care by the different actors who participate, as well as the closer cultural, economic and social ties between healthcare professionals, patients and relatives. Above all, the view of the child should be complete, going beyond the supposed organic

There exist many different ways for the child to access the contents of pain and happiness. Nevertheless, a leading Projects for human happiness agent for carriers of chronic disease requires going beyond the implementation of technical methods and procedures or structural knowledge of disciplines, in order that new meanings and new ways of listening

Adam, P. & Herlizch, C. (2001). *Sociologia da doença e da medicina*. 1a. Edição EDUCS: ISBN 85-

Alves, C. A. (2009). Desafios da humanização no contexto do cuidado da enfermagem

Antunes, J. L.F. (1989). Por uma geografia hospitalar. *Tempo social, Revista Sociologia*. Vol. 1,

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**6. References** 

limitations and inability to express feelings and experiences.

and new points of view can be expressed in spaces of care and attention.

dimensions of individual life with its habits and customs and communitarian life, both being originating dimensions in the character and identity of the subjects. It is to be able to incorporate the ethos of the other in a process which extends itself making that therapeutic moment a unique moment of contact and dialogue.
