Daniel Oppenheim

Guidelines for assistance to terminally ill children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology

This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the pediatric oncology community as a useful set of guidelines. It should be always possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receive adequate medical, spiritual, and psychological support, and that the child at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain.

Guidelines for a therapeutic alliance between families and staff: A report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology

This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the childs best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.

Optimal care for the child with cancer: A summary statement from the SIOP working committee on psychosocial issues in pediatric oncology†

Since its foundation in 1991, the SIOP Working Committee on Psychosocial Issues in Paediatric Oncology 1 has developed and published 12 sets of Guidelines for health‐care professionals treating children with cancer and their families. Those elements considered essential in the process of cure and care of children with cancer are summarized in this document as a formal statement, developed at the 2007 SIOP annual meeting in Mumbai. Elaboration of the concepts with detailed strategies for practice can be found in the referenced guidelines [1–12] and in a companion publication [13]. This article is a summary of what practitioners considered critical elements in the optimal care of the child with cancer, with the goal of stimulating a broader application of these elements throughout the SIOP membership. Pediatr Blood Cancer 2009;52:904–907.

The Psychological Burden Inflicted By Multiple Cancers in Li-Fraumeni Families: Five Case Studies

To gain insight into the psychological, emotional, relational, and family problems of families afflicted by Li-Fraumeni syndrome, we interviewed members of five such families in the Pediatric Oncology Department, Gustave Roussy Institute, where at least one member of the family had been treated. These interviews showed that families were psychologically fragile, that their interactions and thinking patterns were related to a family background plagued by the repeated occurrence of cancer, and was often marked by physical or psychological violence. They had complex imaginary etiologic explanations, and showed an ambivalent willingness to learn about cancer and the risks involved. They expressed their fear of transmitting doom and death, posed questions about whether their parents would have had them had they known the test result, and about what their own attitude would be toward childbearing. Thus genetic testing awoke disconcerting and unsolved questions for them. These first results can contribute to the design of supportive interventions and future clinical research.

Tumeurs cérébrales de l'enfant : morbidité et suivi à l'âge adulte

This chapter presents guidelines for the follow-up of children with brain tumors, whether benign or malignant, in their transition to adulthood. The consequences of their disease and its treatment overlap greatly. The complications and long-term follow-up are detailed based on the specialists involved.

Rapport 2008 : La transition de l’enfant à l’adulte en neurochirurgieTumeurs cérébrales de l’enfant : morbidité et suivi à l’âge adulteChildhood cerebral tumors: Morbidity and follow-up into adulthood

This chapter presents guidelines for the follow-up of children with brain tumors, whether benign or malignant, in their transition to adulthood. The consequences of their disease and its treatment overlap greatly. The complications and long-term follow-up are detailed based on the specialists involved.

Préserver la fertilité chez les adolescents traités pour un cancer. Le point de vue du psycho-oncologue

ResumeLa question de la fertilité est une préoccupation majeure pour les jeunes adultes guéris d’un cancer. C’est pourquoi il est souhaitable de proposer un recueil de sperme à tout adolescent devant être traité pour un cancer. Cette proposition s’inscrit dans la préoccupation des oncologues d’en prévenir les séquelles.Pour que cet acte se fasse dans de bonnes conditions et pour que l’adolescent l’assume, il importe de bien connaître la psychopathologie et les comportements des adolescents confrontés au cancer: leur préoccupation de leur corps, de leur apparence, de leur sexualité, de leurs relations à leurs pairs autant qu’à leurs parents, de leur valeur et de leur narcissisme, de leur identité. Ceci aide à comprendre et à dépasser les raisons diverses de leur difficulté (et d’en atténuer le sentiment douloureux d’échec) ou de leur réticence à le faire: sidération due au diagnostic de cancer, inhibition sexuelle, incompréhension et méconnaissance, pessimisme sur son devenir, incapacité à se projeter dans l’avenir, mauvaise relation aux parents, discrédit de la parentalité, crainte de transmettre le cancer, etc. Connaître ces éléments évite de respecter trop vite une opposition superficielle qu’ils pourraient ensuite regretter.De même, il serait souhaitable que des liens plus étroits existent entre service d’onco hématologie et CECOS, de disposer de matériel d’information adapté aux adolescents, de mieux faire connaître la psychologique spécifique des adolescents, de comprendre les positions des parents.AbstractThe question of fertility is a major concern for young adults successfully treated for cancer, which is why semen preservation should be proposed to all adolescent boys prior to treatment of a cancer. This proposal is part of the oncologist’s approach to prevent sequelae.To ensure that semen cryopreservation is conducted under good conditions and is accepted by the adolescent, it is important to have a good understanding of the psychopathology and behaviour of adolescents with cancer: their preoccupation with their body, their appearance, their sexuality, their relationships to their peers and to their parents, their value and narcissism, their identity. This helps the clinician to understand and overcome the various reasons for their difficulty (and to lessen the painful feeling of failure) or their reticence to perform semen cryopreservation: paralysed by the diagnosis of cancer, sexual inhibition, lack of understanding and ignorance, pessimism concerning outcome, incapacity to project into the future, poor relationship with parents, discredit of parenthood, fear of transmitting the cancer, etc. A good understanding of these elements can avoid an excessively rapid acceptance of a superficial opposition to this procedure that the patient could subsequently regret.Closer collaboration should be developed between oncology-haematology departments and CECOS units to provide suitable information material to adolescents, to improve the understanding of the specific psychology of adolescents, and to understand the parents’ positions.

Personal freedom and genetic overdetermination.

We do not intend to specify definite proposals as regards the scientific responsibility of genetic practice. This field of predicting the development of a pathology in an individual and family history requires reflection on the perception of personal risk, of the importance and reassurance deriving from a personal history, and of the benefits sharing knowledge and care with the clinical and scientific world. We evaluate the possibility to expand a reflection on sign-possibility and sign-expression of disease that could develop a wider comparison with personal freedom when confronted by genetic, philosophical and historical determinations. A parallel and preliminary consideration is made of guidelines for diagnostic and therapeutic behavior.