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

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 supplementary and critical funding.

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 energies of all members of society to this end.

The role of physicians and health care team members working together in cooperation with parents as equal partners is to:

1. Dedicate time, energy and creativity to collaborate with parent associations by suggesting and arranging joint meetings and acting in advisory capacities.

How to Accompany Children and

and resentment.

Parents During the Different Phases of a Severe Chronic Disease 257

between equals. Both parents and the chairman or a senior medical staff member should be present, as well as the head nurse or another staff member. The attendance of the family's local physician should be encouraged unless parents do not agree. If requested the child with cancer (according to age), other family members (e.g. grandparents: they are significant sufferers that often receive little attention!) or close friends also may attend this session.

When communicating with the child, the physician should explain the disease at the level of development of the child, using pictures and analogies such as the flower garden to help the child's understanding. The physician should make sure that the dialogue is truly a two-way interaction, with the child invited to ask questions and having the answers explained as clearly as possible. Depending on age and level of development, the physician should talk to the siblings as well, explaining to them the basic elements of the disease and its treatment, and having them as well communicate back to the parents what they understand about the

From the earliest intervention periods, the health care team members have all they can do, first to focus on the needs of the children with cancer, and then on the needs of the parents. The parents are overwhelmed by their concerns for the sick child, giving their immediate and full attention to the medical treatment of their sick child. Without any ill intention on the part of already overburdened parents, siblings are often inadvertently ignored. We should try to give attention to the needs of the siblings as well, and not let them be forgotten. During this time of crisis, when the parents are already giving their almost undivided attention to the sick child, how does one bring the needs of the siblings to parents' attention? How does one encourage and help the family to return to as normal a family life as possible as soon as possible? There are general principles for helping take care of the needs of siblings that apply throughout the treatment process, and there are principles specific to each phase of treatment: what to expect both for themselves and for their brother or sister now versus after physical changes occur, or changes in their relationships with their brother, sister, and parents, and what they can do to help during these transitions; and what adverse effects the siblings might have on the patient (for example, "spreading germs," e.g., a cold, or picking fights). Members of the health care team can speak with parents about the need to support the siblings, despite all of the other burdens that go into caring for the ill child. They can encourage the parents to share and generate suggestions regarding how to involve the siblings from the very beginning. Parents need to communicate with and listen to siblings. As an instinctively human reaction, in the absence of factual information, siblings tend to fear the worst, even for their own health. When parents and members of the health care team attempt in good faith to shield the siblings from knowledge about the illness, such well-intentioned hiding of the truth often drives the siblings to fear even worse possibilities, and can lead to feelings of isolation, guilt,

At the time of diagnosis, health care team members and other parents when feasible should share with the parents of a newly diagnosed child the need to keep siblings informed from the very beginning, demystifying the illness and the treatments; parents should be

illness. In this way, an open system of communication is set up within the family.

**6. The siblings: At diagnosis, during treatment, over the time** 

