[Show abstract][Hide abstract] ABSTRACT: In den letzten Jahren ist die Anzahl von Patienten, die erfolgreich wegen einer Krebserkrankung im Kindesalter behandelt wurden, stetig angestiegen. Mitglieder des Früh- und Spättoxizitäts- sowie Ausbildungskomitees der internationalen Berlin-Frankfurt-Münster Studien-Gruppe (I-BFM-SG-ELTEC) haben 45 pädiatrische Krebsspezialisten (Onkologen, Psychologen, Pflegepersonal, Epidemiologen, Eltern und Überlebende) aus 13 europäischen Ländern (zusätzlich 5 Experten aus Nordamerika) vom 27.–29.10.2006 nach Erice (Sizilien) eingeladen, um die Lebenssituation der Kinder nach einer Krebserkrankung zu besprechen, eine Definition von Heilung festzulegen sowie die Notwendigkeit und die Organisation der Nachbeobachtung und Nachsorge zu diskutieren. Es war das erklärte Ziel der Konferenz, mit Hilfe der persönlichen und professionellen Erfahrung der Teilnehmer ein generelles Dokument zu erarbeiten, das die Meinung dieser Arbeitsgruppe zur Heilung und Nachsorge von Überlebenden einer Krebserkrankung im Kindesalter wiedergibt. Dies ist in den 10 Punkten des Erice-Dokuments zusammengefasst.
[Show abstract][Hide abstract] ABSTRACT: Since its foundation in 1991, the SIOP Working Committee on Psychosocial Issues in Paediatric Oncology1 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 . 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.
Pediatric Blood & Cancer 02/2009; 52(7):904-7. · 2.35 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Administered the Current Adjustment Scale (CAS) in a follow-up study with 38 families of pediatric cancer patients 5 yrs after the children's treatment had ended and 13 families 5 yrs after the children had died. Findings revealed that families with the long-term cancer survivor generally had less difficulty adjusting than families whose child had died. A regression analysis, comparing the families' adjustment during the course of treatment with their adjustment 5 yrs later, confirmed the consistency of family functioning over time. A factor analysis of the CAS resulted in 3 factors associated with family adjustment: (1) the family was able to resolve questions about the cancer and focus on matters unrelated to the disease; (2) the family system was adaptive, healthy, and supportive of its members; and (3) family members were able to seek help when needed. Themes that helped differentiate families that had adjusted well from those that had not are discussed, and suggestions for interventions early in the course of treatment that may help families adjust better over time are offered. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Journal of Psychosocial Oncology 10/2008; · 1.04 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Adolescence is a time of great physical change and maturing brain function. This leads to adolescents establishing independence and coming to terms with the implications of their own actions. Not surprisingly, this phase is characterized by experimentation with both constructive and destructive behavior. Studies in many areas of chronic illness have shown that adolescents frequently neglect their care and revolt against the rules established during their childhood. It is therefore to be expected that teenagers diagnosed with a life threatening illness, such as cancer, may on occasion not fully comply with their therapy. The way forward includes improving communication and fully involving these young persons in their treatment planning, thereby moving from compliance to concordance. Additional improvements should be sought in medication, early recognition and support of familial or social problems, and using a specific adolescent multidisciplinary team. Research should not be limited to clinical trials.
[Show abstract][Hide abstract] ABSTRACT: The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time. Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word 'cure' should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group's philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors' cure and care.
European Journal of Cancer 09/2007; 43(12):1778-80. · 5.06 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Research on the relevance of social support to cancer has been plentiful since the first American Cancer Society workshop on methodological issues in behavioral and psychosocial science. Nonetheless, critical shortcomings continue to characterize the attempt empirically to establish such things as the extent to which social support predicts adjustment to cancer diagnosis and treatment. Prominent among these is the failure to adequately address large elements of the social structure, such as social class and urbanization, and to investigate how they shape the well being of persons with or at risk for cancer and their caregivers. We recommend that more psychosocial research on the link between social support and cancer be conducted within populations beset by poverty and without adequate access to health care. Funding is needed for the training and maintenance of multidisciplinary and multicultural teams of researchers working within community-based organizations and hospitals serving the underserved.
Cancer 06/2006; 67(S3):788 - 793. · 5.20 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This is the 11th official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. There is a tendency for some physicians to make blanket statements against the use of non-proven, non-conventional therapies, even when these therapies are not harmful. There is an equal and opposite tendency on the part of many parents to do all that they possibly can for their children, including using any non-conventional therapy they feel might do some good. The health care team must open a healthy dialogue with parents that will lead to a clear distinction between those complementary therapies that are harmful and those that are not, indeed, might even be helpful psychologically if not therapeutically.
Pediatric Blood & Cancer 02/2004; 42(1):106-8. · 2.35 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This is the 11th official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. There is a tendency for some physicians to make blanket statements against the use of non-proven, nonconventional therapies, even when these therapies are not harmful. There is an equal and opposite tendency on the part of many parents to do all that they possibly can for their children, including using any non-conventional therapy they feel might do some good. The health care team must open a healthy dialogue with parents that will lead to a clear distinction between those complementary therapies that are harmful and those that are not, indeed, might even be helpful psychologically if not therapeutically.
[Show abstract][Hide abstract] ABSTRACT: To evaluate how parents viewed the authors' practice of audiotaping the initial communication of the leukemia diagnosis and of the complete program of care, including the prognosis.
From January 1997 through December 1998, at the end of the formal communication interview, parents were asked to evaluate the audiotaping by filling out a questionnaire concerning the procedure.
Sixty-three parents of children with leukemia participated.
The authors' use of audiotapes was strongly supported by the parents as a supplementary intervention and has become a routine procedure.
Journal of Pediatric Hematology/Oncology 06/2003; 25(5):368-71. · 0.97 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This is the eighth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. It deals with a topic discussed and approved by the SIOP Committee; namely, "Recognition, prevention, and remediation of burnout in health care professionals participating in the care of children with cancer." It is addressed to the Pediatric Oncology community and outlines: 1) the general definition of burnout as mental and physical exhaustion, indifference, sense of failure as a professional, and sense of failure as a person; 2) the causes of burnout from the nature of the work itself, the work environment, and the characteristics of the individual; 3) the prevention of burnout, changing the detrimental aspects of one's work environment and modifying one's own behavior; and accepting methods to remediate burnout when it occurs.
Medical and Pediatric Oncology 09/2000; 35(2):122-5.
[Show abstract][Hide abstract] ABSTRACT: The purpose of our research was to evaluate the attitude to face the life cycle and the impact that the experience of childhood leukemia may have had in a group of adolescents who had the disease cured. A questionnaire was administered at the Pediatric Hematology Center, San Gerardo Hospital, Monza, Italy, to all former patients age 12 to 20 years and off therapy from leukemia for at least 2 years (total of 116 adolescents) during 1997; 70 patients responded to the mailing and a comparison group of 70 secondary-school students was investigated. The two groups were matched as closely as possible on key characteristics (age, gender, socio-economic level of families, education and occupation of the parents, and geographic area of residence). The Offer Self-Image Questionnaire was the instrument used in this study. Overall, the teenagers in whom leukemia was cured showed a more positive and mature self-image (psychologic, social, attitude toward family, and coping) compared with the student group (statistical evidence, P < 0.05). An effective psychosocial support for patients and their families during their treatment, in addition to medical therapy, is strongly recommended. The majority of survivors of childhood cancer grow successfully without serious psychologic sequelae.
Journal of Pediatric Hematology/Oncology 01/2000; 22(5):417-21. · 0.97 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This is the seventh official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. This document develops an additional topic discussed and approved by the SIOP Committee, "Assistance to siblings of children with cancer. " It is addressed to the pediatric oncology community and outlines general principles for helping siblings throughout phases of treatment: at diagnosis, during treatment, in the event of relapse, during bone marrow transplantation, after completion of therapy, during palliative care and the terminal phase.
Medical and Pediatric Oncology 11/1999; 33(4):395-8.
[Show abstract][Hide abstract] ABSTRACT: 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.
Medical and Pediatric Oncology 02/1999; 32(1):44-8.