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

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, and resentment.

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

How to Accompany Children and

concern specific to that child.

**9. Impending death: At the end of life** 

**follow-up** 

Parents During the Different Phases of a Severe Chronic Disease 259

**8. Long-Term survivors or better "cured" subjects: After treatment, long-term** 

How well are the children responding to the increasingly successful treatments? Programs oriented to the needs of the long-term survivor should begin when the child goes off therapy, with centers focusing on the sequelae specific to each form of illness, treatment, toxicity, and future problems specific to each child's needs. Centers should offer counseling programs for the more serious medical and psychosocial problems, adapted to the need of each individual and local culture. Centers should develop specialty clinics, managed by the pediatric oncologist who treated the children, and having available a full range of adult and young adult specialists as consulting physicians. Each long-term survivor should be monitored for special conditions related to their unique history as well as their age-specific developmental concerns. Programs should include psychological counseling for the

As medicine continues to achieve an increasingly higher success rate in long-term survival, we should follow survivors to determine further potential long-term sequelae. The longterm role of each pediatric hematology/oncology center is to follow the survivors until there is assurance that the child will have no further long-term sequelae. It is important and critically necessary to follow the child until the disease is considered "cured" (at about five years). After that time, one should not over-medicalize the survivor, but help the child to make the transition to normal health-care status. When specific sequelae (such as heart problems) are known for a particular child, that child should be followed for the issue of

The clinic should keep a careful computerized record of essential data particular to each survivor so that in the future, when the now-adult survivor is seen by an adult physician,

Psychological research studies that have followed the survivors of childhood cancer for many years after successful treatment have found, not only that the now-adult-survivors are doing well, but that in many way having learned from the challenges of their childhood cancer experience they are better prepared for the more pressing challenges of adulthood than are

Despite the remarkable growth in the percentage of cures and the increasing sense of hope being given to newly diagnosed children and their families, many of the children are not able to be cured. Death for some remains a reality. There are three periods of time surrounding this final phase of life that have become the subjects of research. The first is the period when treatment is judged to be no longer effective and the difficult decision is made to move from curative intent to the palliative phase of care. The second is the period from the beginning of palliative care to the death of the child. The third is after the child dies,

A child with cancer is considered by his/her physician to be moving from curative to palliative care when the child cannot be successfully treated by presently available therapies, and the child needs specific treatments, identified to be palliative and not

the data on the survivor's previous cancer experience will be available upon request.

their peers. The so-defined resilience is not an utopia but a always more visible reality.

with the staff counseling the parents in their grief following the death of their child.

survivors experiencing adjustment difficulties and significant side effects.

encouraged to bring the siblings to the hospital if the siblings wish to go, let them visit with their brother or sister, and let them see how the hospital looks; parents should be encouraged to explore the benefits of immediately telling the siblings, and should help choose which person will be the one to inform the siblings, using simple and ageappropriate language and phrasing when delivering the news of the diagnosis; and siblings should have explained to them that they were in no way responsible for causing the cancer.
