**5. Final considerations**

It is important to highlight that working closer with chronically diseased children implies certain challenges can't be ignored by healthcare professionals. Firstly, every child, independent of their diagnosis, should be perceived as and treated as a child and not only as a clinical case or disease. It is not enough to have knowledge and mastery over techniques and procedures, it is also necessary to have knowledge of infant development and the perception that care is not limited to treating only symptoms. Part of the professional role should include helping children to deal with the barriers which originate with disease and expanding their limitations in favour of greater quality of life.

The various forms of healthcare need to be introduced to the child, not merely as the recipient of diagnostic and therapeutic techniques, but rather as a subject that possesses various ways to elaborate their experiences of living with chronic illness. The ways which children elaborate about the experience are different from adults, but this doesn't render them incapable of valuing the experience and extracting from it new meanings which healthcare staff can help to produce.

Hospitalisation contexts carry the potential to produce something new, transmuting into new pathways which allow for new perspectives as well as generating closure, diminishing the creative wagers of the subjects. The potential to change situations which cause fatigue, polarisations of care and dichotomies of knowledge is contained in the capacity to unite healthcare staff collectively towards an objective, the construction of which is shared between the patient, family and healthcare professionals (Alves, 2009).

In this sense, the meetings with each patient can promote changes in the perception of the subject because there are moments which are full of creative possibilities orientated towards solutions for coping with chronic infant disease, producing positive changes for the patients, families and healthcare professionals.

The participation of relatives in the hospitalised context and care of chronically diseased children also needs to be rethought so that the dichotomies and disputes of space and knowledge can be broken down. Learning about care inevitably occurs in families which accompany the daily care provided to the child making this experience a way to integrate different cultural knowledge and values.

Within the world of attention and assistance, acceptance and dialogue are wires, not only permeated by concepts and theoretical frameworks, but through the capacity to meet and produce subjectivity, revising values, perspectives and expectations.

To this end, necessary changes to the dynamics and processes of healthcare staff are needed, beginning with a management model which is shared and constructed in a collective fashion between healthcare professionals and the users of such services in order that it may become possible to break and minimise distance and to value the capacity for collective union.

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

It is important to highlight that working closer with chronically diseased children implies certain challenges can't be ignored by healthcare professionals. Firstly, every child, independent of their diagnosis, should be perceived as and treated as a child and not only as a clinical case or disease. It is not enough to have knowledge and mastery over techniques and procedures, it is also necessary to have knowledge of infant development and the perception that care is not limited to treating only symptoms. Part of the professional role should include helping children to deal with the barriers which originate with disease and

The various forms of healthcare need to be introduced to the child, not merely as the recipient of diagnostic and therapeutic techniques, but rather as a subject that possesses various ways to elaborate their experiences of living with chronic illness. The ways which children elaborate about the experience are different from adults, but this doesn't render them incapable of valuing the experience and extracting from it new meanings which

Hospitalisation contexts carry the potential to produce something new, transmuting into new pathways which allow for new perspectives as well as generating closure, diminishing the creative wagers of the subjects. The potential to change situations which cause fatigue, polarisations of care and dichotomies of knowledge is contained in the capacity to unite healthcare staff collectively towards an objective, the construction of which is shared

In this sense, the meetings with each patient can promote changes in the perception of the subject because there are moments which are full of creative possibilities orientated towards solutions for coping with chronic infant disease, producing positive changes for the patients,

The participation of relatives in the hospitalised context and care of chronically diseased children also needs to be rethought so that the dichotomies and disputes of space and knowledge can be broken down. Learning about care inevitably occurs in families which accompany the daily care provided to the child making this experience a way to integrate

Within the world of attention and assistance, acceptance and dialogue are wires, not only permeated by concepts and theoretical frameworks, but through the capacity to meet and

To this end, necessary changes to the dynamics and processes of healthcare staff are needed, beginning with a management model which is shared and constructed in a collective fashion between healthcare professionals and the users of such services in order that it may become possible to break and minimise distance and to value the capacity for collective union.

moment a unique moment of contact and dialogue.

expanding their limitations in favour of greater quality of life.

between the patient, family and healthcare professionals (Alves, 2009).

produce subjectivity, revising values, perspectives and expectations.

**5. Final considerations** 

healthcare staff can help to produce.

families and healthcare professionals.

different cultural knowledge and values.

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 of values held by both the individual and collective.

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 limitations and inability to express feelings and experiences.

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

#### **6. References**


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**How to Accompany Children** 

Momcilo Jankovic and Giuseppe Masera *Pediatric Clinic, University of Milan - Bicocca, San Gerardo Hospital, Foundation MBBM, Monza,* 

*Italy* 

**and Parents During the Different** 

**Phases of a Severe Chronic Disease** 

Our experience is related to the treatment of a lifethreating disease (leukaemia) and from it should be applicable the same concepts or strategies to any other severe chronic disease.

Since the early 1970s, a cure for childhood cancer has become a reality: over 80% of cases are now cured. Yet, despite the relatively high cure rate, the diagnosis of leukemia continues to place a heavy burden on family functioning. The parents must walk the narrow line between focusing too much on the child's disease and treatment and maintaining a normal family life. Because cure is such a real possibility, the children must be prepared for a full and active participation in adult life, just like their peers. Proper discipline must be maintained within as normal a family life as possible. The child's continued attendance at school and participation in normal childhood activities is imperative in the child's

For all these reasons, psychosocial intervention has become a necessity in the treatment of

Although there is little disagreement that the ultimate goal of treatment for childhood cancer is the total cure of the child-medical, educational, psychological, and social-the issue is how best to achieve this end. The literature is filled with research-based conclusions on which type of psychosocial intervention is best, including when and how one should communicate with the child about the diagnosis, how to help the parents maintain some sense of normality in their family life, how to help the child return to school, how to keep the siblings informed, how to start parent groups, how to involve parents in medical decision-making, how to prepare for the terminal phase when it occurs for some children, and how to continue to monitor long-term survivors. Problems occur whenever the approach must be modified to meet the needs and cultural preparation and expectations of the children and their families. This is especially true when one tries to apply conclusions that are appropriate in one culture to other centers and to other

the child, even for those children who eventually will die from the disease.

**1. Introduction** 

preparation for adulthood.

cultures.

Zanolli M.L. & Merhy E.E. (2001) A pediatria social e as suas apostas reformistas. *Cadernos de Saúde Pública*, Vol. 17, No. 4, pp. 977-987. ISSN 0102-311X **14** 
