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School-hospital project at the Oncology Department

In a chemotherapy ward...

Primary malignant tumours of the bones are very rare but they include various types with different characteristics. The most common types are also the more aggressive and they affect mainly patients in paediatric age. In Italy the rate of the two most frequent tumours (osteosarcoma and Ewing's sarcoma) is around 1 case every 3-4 million inhabitants/per annum (that is around 150-200 new cases every year). The probability of treating these tumours successfully has clearly increased in recent decades, since a special chemotherapy treatment has been combined with the surgical removal of the affected bone segment. With this treatment more than half of the patients fully recover. In case of relapse, however, healing still remains a realistic objective that is pursued by all available means.

The Rizzoli Orthopedic Institute was one of the first centres internationally to apply combine surgery and chemotherapy, and at the beginning of the '70's founded a Department of Musculoskeletal Oncology (the I. F. Goidanich Department). In addition, since 1982, a group of operators of the Rizzoli institute has set up an association for the study and treatment of bone tumours and soft tissues, a non-profit association whose main goal is to improve the treatment and life of patients affected by these diseases.

If we consider only malignant bone tumours, for which both pre - and post-operative treatment is indicated, currently around 100-120 new cases every year are treated inside the institute. The patients, after diagnosis, immediately begin pharmacological treatment; around 2-3 months later the surgical operation (that enables the salvage of the affected limb in more than 90% of cases today) is performed, and finally chemotherapy continues for about 6-7 more months. The full treatment therefore involves hospitalization at regular intervals for a period of about 9-10 months, with an overall hospitalization that reaches and at times it exceeds 100 days per individual.

These young people, coming from all the regions of Italy, are removed for a long time from their own environment, and forced to live a traumatizing experience in a strange environment.

... a school

During the treatment period, the school children are hardly ever able to attend lessons at their schools of origin when they are not hospitalized. Missing school is often due to the alteration of the hematological values (red globules, white globules, platelets); at times the reason is instead directly related to the presence of the disease that, in the preoperative period, alters the strength of the bone segments and produces a high risk of fracture and, after the surgical operation, often bulky casts are applied.
The classroom at the Rizzoli Hospital

The need for an internal hospital school has become more and more evident in recent years. An investigation performed on 211 patients in pediatric age, hospitalized for long periods of chemotherapy in the decade 1985-1995, showed that 40% of the patients aged between eleven and nineteen missed one or two academic years. In the answers to the questionnaire on the problems of studying encountered during the disease, many patients and parents had complained about the indifference and the scarce support of the schools of origin.

The interruption of the normal educational process can thus represent for these children a further unjustifiable penalization. The loss of their relationships with their friends and teachers increases the sense of isolation and contributes to focussing their entire attention on their disease. Providing a school service can be considered a "social" service that not only avoids the injustice that violates the young patient's constitutional right to education, but can also represent a method of "treatment", aimed at distracting the patient from the thought of the "sickness," and direct their energy into their academic future and life.

In the 1997/1998 academic year, the Bologna education superintendency and the management of the Rizzoli institute set up this project.

Methodology

The school-hospital project provides didactic help not only to patients in compulsory education, but also to those attending high school.

Applying a specific method of education to coincide with the cycles of treatment administered to the pupils is one of the most complex problems with regards to the high school because of the number of subjects taught in Italian schools, because of the difficulty in finding an available teacher. The pupils are usually hospitalized periodically for a few days (from two to five) and the schedule for hospital admission, set by an initial protocol, are not always respected. Furthermore, there is a continuous alternation of pupils from different places, grades, and types of school (from the high school to the technical and professional institutes). Therefore, courses are customized to suit each student. The pedagogist ensures coordination among teachers, volunteer, pupils and schools of origin.
The play-room at the Chemoterapy ward

In nearly all cases the lesson is on an individual basis, because of varying study programs, and is held in the hospital room where the pupil is often bedridden. Those who are able to get up can have their lesson in the classroom. There is an office where all teaching materials, computers and technical equipment (donated by public and private companies) necessary for school work, are kept. To keep in touch with the pupils in the period that they spend at home between hospitalizations we often supply them with portable fax telephones to facilitate them in working with us, or with the school of origin, which represents a 'presence' that should not be lacking because of the illness.

Besides the academic result, i.e. the pupil's promotion, at least three very satisfactory aspects regarding the work we are doing should be underlined. In the first place there is an ever growing and unexpected enthusiasm of young patients towards learning academic subjects. The request by some patients to have lessons a few hours before surgery or during the days after surgery, suggests a desire to distance themselves from the illness and return to their own "normal" world. In this our objective has been perfectly achieved.

Secondly, our intervention helps to bring the school closer to the patient; for pupils in the first year of high school who have not yet attended the school our service acts as a mediator between the patient, teachers and school friends. For patients in higher grades a contact is maintained, which might otherwise be broken, and therefore the disease may become a cause of embarrassment for school friends and teachers.

The families of the patients have expressed their gratitude several times because we look after their children appropriately according to their age and give them a normal lifestyle, thus distracting them from thoughts of their illness. The teachers of the schools of origin have also expressed their gratitude for the possibility offered by the project to be able to maintain a constructive relationship with their students and at times they have told us how this has contributed to sensitizing some local bodies that have donated or supplied the schools with technical equipment, ranging from simple fax machines to video conferencing.