**1. Introduction**

252 Complementary Pediatrics

Zanolli M.L. & Merhy E.E. (2001) A pediatria social e as suas apostas reformistas. *Cadernos* 

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 preparation for adulthood.

For all these reasons, psychosocial intervention has become a necessity in the treatment of the child, even for those children who eventually will die from the disease.

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 cultures.

How to Accompany Children and

**approaches** 

**the disease** 

supplementary and critical funding.

parents as equal partners is to:

the energies of all members of society to this end.

Parents During the Different Phases of a Severe Chronic Disease 255

**3. Research: Psychosocial research is essential to build up different clinical** 

The primary psychosocial concern in child cancer care is to help the children and their families cope with the diagnosis of cancer and its aftermath. The children and their families, the great majority of whom are struggling with the new diagnosis but who do not show signs of falling apart, need our support. How can we most effectively help mentally healthy children whose lives have been suddenly turned upside down with the diagnosis of a lifethreatening illness? We can't expect the families to wait for intervention until we can fully determine which intervention works most effectively and validly. We must try to help the child and family who have an immediate here-and-now need for support, while pursuing scientifically valid controlled research designed to sort out effective from ineffective interventions. The optimal clinical service is the application of the best available evidencebased findings applied locally in cultural context. Well done research is costly and difficult to accomplish in centers with limited resources. However, the health care team even a center with limited resources can listen carefully to the children and their families to find out how they are functioning and how they are responding to the service that is offered. It is recommended that parents be asked formally how well they view the center's functioning and this satisfaction within a simple nonrandomized like study. Modifying one's approach based on a reflection on the families' level of satisfaction with the service can help make the service better. Even in countries with limited resources, it is possible and critically essential

to give full attention to the psychosocial needs of the children and their families.

**4. Alliance between parents and physicians: The basis in all the phases of** 

It is clear that a hospital health care team can not do it all. Parents should be invited increasingly to participate actively in their child's medical, psychological and social care, brought in as part of the decision-making process and support system. There should be a healthy, cooperative, and open alliance between the parents and the members of the health care team, including the establishment of parent groups for self-help and for raising

Wasteful expenditure of negative energy by anyone involved might be more profitably used, and in turn mobilize new and even more powerful positive energies, by cooperating toward fighting the disease in a therapeutic alliance. This alliance may take one or both of two forms: (a) an alliance between individual family members parents and children and individual medical staff members; and (b) an alliance between families as a group and health care team members as a group. These therapeutic alliances are formed when both parties work together with a common purpose pooling resources toward a common goal: curing the cancer and minimizing its medical and psychosocial side-effects, and mobilizing

The role of physicians and health care team members working together in cooperation with

1. Dedicate time, energy and creativity to collaborate with parent associations by

suggesting and arranging joint meetings and acting in advisory capacities.

What works in one cultural setting may not work as well in others. How might a center apply programs from one country or setting to another? Not all hospitals can afford a psychosocial team.

Not all cultures appreciate intervention by a psychologist or psychiatrist. What can pediatric hematologists do to modify their approach to the children and their families with maximal success, in a manner most appropriate to and respectful of the needs of the families within their own cultural setting? And above all, how can a center best monitor its intervention programs, to ensure that the needs of the children and their families are being met appropriately, in their best interests, and with greatest effectiveness and use of resources?

How do we help a family whose child has been diagnosed with a life-threatening illness? How do we help the children and their families cope with the illness and its treatment? As the medical treatment of childhood cancer has moved from an inevitable death sentence to an approximately 80% cure rate, the importance of including the psychosocial in the treatment of the children has now been so integrated that the majority of the pediatric cancer centers throughout the world now view treatment as a biopsychosocial process.

From the very beginning, with the shock of the diagnosis itself, the children and their families undergo a critical change in their lives. The illness has a high social and economic cost, even if the treatment itself is done free of charge to the families. Whether the child is treated in countries with limited resources or in the wealthier countries, personal, family, and cultural circumstances can block access to a full cure, a cure that treats the child at all levels: medical, psychological and social. As the families face the task of adjustment to this new reality, with the support of the hospital health care team the families can find a source of renewed energy and the inner strength to cope with the disease and the treatment process.

Each phase of treatment has its own characteristic that contribute to the reaction of parents and children. The phases are the following: acute phase, during treatment, after treatment, long-term follow-up, end-of-life.
