John J. Spinetta

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.

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.

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.

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.

Do as I say or die: compliance in adolescents with cancer.

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. Pediatr Blood Cancer 2008:50:1099–1100.

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.

Manifestations of Levels of Functioning in Grieving Families

This article describes processes and patterns that are characteristic of levels of functioning in family systems where a child has died of cancer from two to nine years earlier. A beginning classification system is developed from Crosby and Joses (1983) description of elements of functional and dysfunctional coping in families following a death. The analysis is based on 111 families in six states and one Canadian province. Validity is demonstrated with one subset of this sample.

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.

Methodology in behavioral and psychosocial cancer research. Measurement of family function, communication, and cultural effects.

W HEN THIS CONFERENCE was first planned, the three topics that form the title of this paper were intended as separate papers. However, in the interest of keeping the conference within manageable time limits, it was believed that the three topics should be handled in one paper. Thus, this paper will address, not one topic, but three: ( 1) family function; (2) communication; and (3) cross-cultural issues. Each topic as applied to adults alone is sufficiently complex and encompassing to deserve a separate paper. When one discusses these issues relative to children, problems surrounding the study of family functioning, communication, and cross-cultural effects take on added complexities. Since methodologic issues are sufficiently complex when discussing either children with cancer or adults with cancer, this paper will not attempt to cover both areas. This paper will focus on studies of children with cancer. Other research experts at this conference are more conversant with studies of adult cancer patients, and applications to adult cancer patients can hopefully be drawn from some of the concerns raised in this paper. This paper will cover the topics in the following order: ( l) cross-cultural issues; (2) communication; and (3) family functioning.