[Non-conventional therapies in childhood cancer: guidelines for distinguishing non-harmful from harmful therapies: a report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology]. / Unkonventionelle Therapien bei Krebserkrankungen im Kindesalter: Richtlinien zur Abgrenzung unbedenklicher von schädlichen Behandlungsmethoden: Ein Bericht der SIOP-Arbeitsgruppe für Psychosoziale Fragen in der Pädiatrischen Onkologie.

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.

Self-image of adolescent survivors of long-term childhood leukemia.

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.

Guidelines for the recognition, prevention, and remediation of burnout in health care professionals participating in the care of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology.

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.

Guidelines for assistance to siblings of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology.

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.

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 child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.

SIOP Working Committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis.

This is the fourth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic discussed and approved by the SIOP Committee: "communication of the diagnosis" is addressed to the pediatric oncology community as guidelines that could be followed. The highly stressful nature of the diagnostic period must be acknowledged, and communication involving the staff and all family members should cover both medical and psychosocial issues. A well-planned and extensive initial session should be followed by continuing discussions. The goal is a knowledgeable family that can talk openly with its members and with the staff.

School functioning for the child with leukemia in continuous first remission: screening high-risk children.

It is well known in the literature that cancer creates educationally related barriers for all children, which may or may not contribute to clinically relevant school problems. The goal of this study was to obtain a base rate for the characteristic pattern of school functioning for children with leukemia, so that the children with the most serious difficulties might be discovered and given the different and flexible help needed. From 1988 through 1994, a questionnaire was administered annually to teachers of all leukemic children in our center. The 291 questionnaire were used to compare the school functioning of children with leukemia with that of matched controls chosen by each teacher as representative of the class as a whole, excluding special education and developmentally disabled students. This approach to matching was chosen as a control for socioeconomic factors as well. The study was conducted with all patients with leukemia entering the center residing in the region of Lombardy, attending school, and either in therapy or out of therapy. After initial treatment, the children with leukemia in our center as a group attended school regularly and willingly. Analyses of variance (ANOVAs) were conducted on the total scores and on scores for each of the subareas of learning, socialization, and emotionality. T-tests, were given to contrast individual item scores of patients with those of their matched controls. On most individual items, children with leukemia did not differ from their classmates. However, significant discrepancies between children with leukemia and their classmates appeared consistently year after year on overall total scores and on each of the three major subcomponents of the test (learning, socialization, and emotionality). The groups most affected were children who were cranially irradiated and children who were under 6 years of age at diagnosis. Children who have been irradiated and children diagnosed under 6 years of age have the greatest risk for difficulties in school functioning and are candidates for greater attention and preventive efforts.

Psychosocial problems and adjustment of children with beta-thalassemia and their families.

This study explores the psychosocial problems experienced by families with children aged 6 to 14 years suffering from beta-thalassemia major (N = 188). The psychosocial problems and the family's adjustment to the effects of the illness were compared across a number of cultures where the disease is prevalent, namely Cyprus, Greece, and Italy. A small number of migrant children in the United Kingdom was also included in the study. Semi-structured interviews were conducted with parents who also completed the Rutter Parental Questionnaire and the Goldberg General Health Questionnaire. Teachers were asked to complete a Children's Behaviour Questionnaire designed by Rutter. In all countries the disease seemed to have a binding effect on the family, thus mobilizing adaptive mechanisms. Father's low education level and the presence of major medical complications were predictors of poor family adjustment. Differences between and within countries may well reflect differences in health policies, existing level of socio-economic development, and in the cultural patterns in coping with a chronic illness.

Telling young children with leukemia their diagnosis: the flower garden as analogy.

A new approach to communicating the diagnosis of leukemia to the young child was carried out in the Pediatric Hematology Department in Monza over a 2-year period (1989 to 1991). Fifty patients ages 6 to 15 years were entered into the program. A physician communicated the diagnosis of leukemia directly to the child without the presence of the parents. A set of 25 slides was prepared. A garden with flowers and weeds was used as an analogy for leukemia. All 50 of the children expressed gratitude for understanding their disease and the families for being able to talk with their children about the disease without panic and stress.

SIOP Working Committee on Psychosocial Issues in Pediatric Oncology.

Recognizing the importance of psychosocial issues in the care and cure of the child with cancer, the board of the International Society of Pediatric Oncology (SIOP) in 1991 constituted a Working Committee on Psychosocial Issues in Pediatric Oncology, with Giuseppe Masera as chair and John Spinetta as co-chair. This committee met for the first time in Rhodes, Greece, in October 1991. The committee discussed various psychosocial issues and developed a document on Aims and Recommendations, summarizing the experiences of major centers. This document was approved by the SIOP board, which recommended diffusion of the document to the pediatric oncology community.

Social environment and social support.

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.

Meetings with parents after the death of their child from leukemia.

There is a growing interest in the emotional status of parents and siblings after the death of a child with chronic disease. For the past 7 years physicians at our center have systematically contacted parents who lost a child because of leukemia within the first few months after the death. From this experience it appears that most parents needed to talk at least once with the physicians who took care of their child. As expected, some parents and siblings were found to have significant psychological problems and to need psychologic support. We suggest that the opportunity to talk with a physician of the attending staff should be provided routinely to parents shortly after the death of a child from leukemia.

The patient's socialization in the community and school during therapy.

As medical advances have made it possible for a greater number of children with cancer to live into adulthood, the focus of concern has shifted from preparation for death to a full and active preparation for adult living. As children live longer, it becomes critical that the family, the larger community, and the school begin to focus on teaching the child and adolescent and young adult skills necessary for an adult participation in society. This article summarizes studies on the school and family, and gives direction to how the professional can direct the school and the family in teaching the child with cancer the socialization skills necessary for growth into adulthood.