Secretary Vereniging 'Ouders, Kinderen en Kanker'
People from various countries have their our own cultural backgrounds. On one hand they do
share many basic principles, like the universal idea that each child, even a child with a
life threatening illness, has the right to receive education, on the other hand there
are many differences. This paper addresses the topic of school reentry of children with
cancer from a Dutch perspective. The Dutch Parent Organisation always has been very
actively involved in this issue. We have developed materials for schools and parents; we
organise workshops and present lectures on this topic, and are nationally known as one of
the experts in this field.
In this paper Marianne first discusses the importance of early school re-entry, second she
describes the situation in the Netherlands, and finally she explains the Dutch school
program.
Some examples
* Rinette, a seven-year old girl has acute lymphoblastic leukaemia. Due to an outbreak of
chicken pocks she has not been at school for three months. During that period she has not
even received one a single card from her classmates or teacher!
Are you surprised that the girl's will to survive has disappeared. She keeps telling her
father several times a day: "I don’t want to go on daddy! Why should I
live? I have no friends! Nobody cares!"
* A thirteen-year old boy with Hodgkin's lymphoma moves up to the second form. A new
school year, and other teachers. The second day at school his new teacher geography asks
him to take of his cap. He refuses. You can imagine the conversation: "You there,
what's your name?" "Wouter, sir." "Wouter, I don't permit caps in the
classroom so take of your cap, please". "No sir, I'd rather not." "I
said, take of your cap." "No sir, I won't" etc.
Afterwards it became apparent that neither this teacher nor the other new teachers knew
that the boy had cancer. His tutor had forgotten to pass on the information. What
surprises even more is that none of his classmates stood up for the boy.
* Martijn, a four-year old boy enters primary school. His mother has a special interview
with the headmaster. She tells him that her son has just finished treatment for a brain
tumour. She explains to him that a brain tumour and its treatment can possibly cause late
effects, especially learning problems. To identify these problems at an early stage it is
very important to keep close contacts with the teacher. The director replies: "Sorry,
we have more children with problems. We cannot be considerate with everyone".
This did not happen twenty years ago. Unfortunately it is still reality for some children
with cancer and their families in these days.
II The importance of school reintegration
During the past decades the long-term prognosis for children with cancer has improved
dramatically. Children with cancer are living longer and are often cured. As the period of
survival extends, the psychosocial and developmental needs of young cancer patients
are being given much greater attention. This shift in focus from medical cure alone, to
both cure and psychological well being, reflects the natural progression of a successful
treatment programme.
In general, integration into school is a critical and essential part of the normal
psychological and social development of any child. In the daily life of a child school
takes a prominent position. Children spend many hours a day at school. At school children
not only learn to read and to write, learn math, geography, history, etc. But - and
perhaps this is even more important - at school children develop social interaction
skills: they build friendships, they learn how to relate to others their age and they
develop self-esteem. These are all very important factors that influence healthy emotional
adjustment.
Children affected by a chronic illness such as cancer are not only entitled to attend
school like any other child, but they must be stimulated to obtain a full recovery
attendance at school.
“Why is school so important?” some would say. “Children with cancer are
suffering from a life threatening illness, why bother them with school and homework when
no one knows whether they have a future, whether they will live or will die?”
There are four important reasons why a child with cancer should attend school:
1) School offers
the child in a period of unremitting suspense something to hold on, and structure. It is
the only thing that is normal. School is part of life before cancer. At school the child
has the chance to forget about his illness, if only for a couple of hours. There are no
overprotecting parents around, there is no pot with pills on the shelf, and there are no
phone calls by friends and family who want to know how things are going. At school he is
no longer a patient, he is just a child.
2) Children who
receive cancer treatment often encounter loss of self-esteem. School offers them a
challenge. Getting good marks for their work - either a test or a drawing - gives them
back their self-esteem. Even children who are terminally ill in many cases remain well
enough to attend school for many months. For children in an advanced stage of their
disease it is very important to continue to attend school when they wish, if only for a
few hours a day. They gain self-esteem and sense of mastery over a deteriorating
situation.
3) Continuation of
school means continuation of social contacts. Also friends may come along easier whenever
the child has to stay home for a while. Isolation is the worst thing that can happen to a
child. When children are unable to remain involved in school activities they may become
increasingly displaced and isolated. “Am I still fitting-in?” is a major concern
for many cancer sick children. Especially adolescents suffer severely from isolation from
their peers. Because of the importance of social relationships and friendships, early
school re-entry and going to school need to be supported and encouraged, even if the
attendance of the child is brief and the participation is limited. School can make a
valuable and positive contribution to the psychological adjustment of children with
cancer.
.4) Finally and probably
the most important aspect: school means perspective, future and hope. The expectation by
parents, teachers and medical staff of staying in school say to the child: “You have
a future!”
III The situation in the Netherlands
The Netherlands has a long tradition of education of sick children, starting at the
beginning of this century. The following decades saw a tremendous increase in the size of
hospital schools and the expertise of their teachers.
However, I must make a note here. As in the case of many other policies, recent
legislation has put the future of the hospital schools at risk. Today still all children
between the age of three and twenty who are hospitalised are eligible to receive
education. In the future these facilities will only be available for children in the
University Hospitals - all Paediatric Cancer Units are part of a University Hospital. The
education of children in general hospitals will become the responsibility of the
child’s home school. Unfortunately we have not been able to stop this process despite
all our efforts and many negotiations with the Minister of Education.
Dutch hospital teachers have followed a special study programme. In addition specific
seminars are offered, organised by the National Association of Teachers in Hospital
Schools.
The aims of hospital education are both didactic and pedagogical. Note the difference
between those two terms that are both synonyms for "educational" but have a
different meaning. Pedagogic actions and aspects are all specifically concerned with
attitudes and upbringing, didactic elements are related to the transmission of knowledge,
values and norms.
The hospital schools try to continue education, to limit and to prevent educational
gaps, to prevent feelings of isolation and to offer future perspectives.
In the Netherlands the majority of children with cancer don't stay in the hospital for a
long time. They go home as soon as possible – often within ten days after diagnosis
- and are treated on an out patient basis. As soon as their physical condition is well
enough they return to their school of origin. This own school is also responsible for home
tuition when the child's condition doesn't permit him to attend school. Hospital schools
help children to re-integrate into their own school and thereby make use of the school
programme developed by of the Dutch childhood cancer parent organisation. Which brings me
now to the last part of my paper: a description of our school programme.
IV School Program
Children with cancer as a result of their illness, will have acquired concepts and
experiences of pain, loss and grief which will have changed them and distinguish them from
their peers. Children who receive cancer treatment - I said this earlier - often encounter
loss of self-esteem. The unusual situation requires them to deal with new and significant
issues, occasionally with some anxiety, so that they may have less attention and energy
for the day-to-day matters of school. They will be less assertive. They will be more
reluctant than their healthy peers to attempt new concepts in which failure is possible
because of the risk of losing more self-esteem through failure. Schooling for these
children should always start out from areas and levels of competence in which they feel
absolutely comfortable and safe.
It is therefore necessary that the teachers at school are well prepared to deal with a
child with a life threatening illness and as well as to help the other children to
understand and accept.
Childhood cancer is fortunately a rare disease. In our country there are 400 new diagnoses
each year. No one would expect the average teacher, faced with a child with cancer in the
classroom, to be trained or emotionally prepared to deal with this serious illness without
outside intervention. For him being confronted with a child with cancer in the classroom
or at school usually is new and presents him with numerous questions. What exactly is
cancer? What does the treatment look like? How do I treat the child and his parents? What
are the emotional consequences for the child? What does cancer mean for the position of
the child within the group? What are the consequences for the siblings? What is it like
for the child to return to school? How will the classmates react? What are the
psychosocial consequences for the child? What are the physical effects? Are there any
cognitive effects? How do classmates react when the child dies? And, how do I deal
with all that?
A child with cancer in his classroom also appeals to the teacher’s own emotions and
feelings. It is not unthinkable that a teacher, in an attempt to avoid this confrontation
with himself, is unable to cope with his feelings and therefore cannot offer the help and
support that the ill child and the class need.
The Dutch childhood cancer parent organisation has a committee Youth and Education that
exists of a school director (primary school), a secondary school teacher, a teacher
special education, and a university teacher – these are all parents of a child with
cancer. This committee developed the school programme. The programme contains the
following:
1) Manual: In 1992 we prepared a short manual for teachers including information about the disease and how to cope with the ill child. Partly we used the information of a leaflet that was published by the Swiss parents group. This leaflet had its third reprint last year.
2) Book: In 1995 the leaflet was followed by a book: Kinderen met kanker: school en toekomst (Children with cancer: school and future). The book was inspired by Pat Spinetta's book "Educating the child with cancer", an edition of the Candlelighters USA, and contains contributions of experts from several hospitals and institutions and of parents.
It is a treasury of information. It gives an explanation of cancer and its treatment, describes the short term side-effects and long-term consequences, especially its effects on the child's functioning at school and its learning skills. Recommendations are made as to how the child, his parents, the classmates and the siblings can be approached by the teachers.
From the contents:
Cancer in children;
The importance of school for a child with cancer;
A child with cancer in the classroom: psychosocial aspects of childhood cancer;
Contacts between the classmates and the sick child;
Cognitive impairment and other educational problems;
Bone marrow transplantation and its effect on the child's education;
Parents' expectations;
Hospital school;
A remote corner of existence (hospital school);
Special education for children with cancer;
Future: choice of curriculum and profession;
Siblings;
Grief and mourning in the class-room;
Sample letters;
Addresses
The objectives of the brochure and book are to inform teachers about the implications of childhood cancer, but we felt this was not enough. We wanted to lend the teachers a hand to inform the other children en help them deal with the situation.
3) Videotapes: Therefore, in 1996 we made two video's, one for children from 7-10, one for children from 11-15. Each video follows five children who have or have had cancer, not in a medical situation but in their relation to their school. Also their classmates are interviewed. The main objective of these videofilms is to prevent isolation of the child with cancer and to make the class aware of the fact that a child with cancer needs his friends, that he cannot do it alone, that he needs support, attention, and companionship. The videotapes are accompanied by a manual for the teachers that give suggestions as to how to work with this information.
4) Teaching boxes: In that same year we composed three teaching boxes for primary schools. One for children from 4-6 years, one for children from 7-10 year and one for children from 10-12. In 1997 a box for older children at secondary school was composed.
The boxes contain information for the teacher and the pupils, according to their age. Some of the information are editions by our organisation, besides we made a selection of books and materials that everyone can buy in the store. The information for teachers is for all boxes the same. The information and other materials for children to are according their age. The boxes for the young children contain a lot of play-materials, since young children naturally express themselves in their play; such as lego (ambulance), fisher price (doctor’s case), hand puppets (doctor, nurse, child, parents), jigsaw puzzles, nurses and doctors clothes, but also picture books, videotapes, and of course the little Chemo-Kasper book and doll. The older the children are, the more books in the boxes; but also the video that I mentioned earlier, a workbook for siblings and friends, an audiocassette made by cancer sick children, a compact disk made by siblings, a booklet for young people with cancer and their friends and information and lessons about cancer.
The important thing is that all material in these boxes has been screened. Too much information about cancer gives the message: you can prevent cancer. Especially the information given by the national cancer societies.
Schools can borrow these boxes for a period of three weeks. They only pay shipping costs.
The project is an enormous success. During the year all boxes – we have several of each - are away most of the time. The brochure, book and video - that are also part of the contents of the boxes - are bought by most schools.
The programme is being introduced to the schools by the Hospital Schools, the psychosocial team in the hospital, the parents, the School Education Services or the Local Health Authorities.
Two years after the introduction of the programme we may conclude
that the majority of the schools make use of the programme, either fully or partly. The
programme makes an important contribution to a successful school re-entry of
children with cancer.
Finally
I want to finish this paper with a couple of good examples:
* Jeffrey is eleven years at the time of diagnosis. After three weeks of treatment he
returns to school. He is bold and wears a cap. When he enters the classroom all boys take
off their caps: they have all shaven their heads in a gesture of solidarity.
* Seven year old Mark is dying. His condition is worsening and he no longer can attend
school. Still he loves to see his friends. Every day during lunchtime two other classmates
come to his house to have lunch, play, watch television. Sometimes he plays with them,
sometimes he just enjoys that they are there.
* Wietske is 16 years old when she hears her brain tumour is incurable. Wietskes last wish
is to build another parent house near the hospital where she was treated. She starts
writing letters to companies, but she cannot do this on her own. Her time is running
short. Then her classmates and friends enter the scene: they organise a gigantic dance
marathon at school and together they raise DFL 500.000, enough to build and decorate a
small house. But they do more: they start folding paper cranes, since an old Japanese
saying says: When you fold 1000 cranes you will not die. When Wietske eventually died at
her funeral her friends spread the cranes over her coffin.
Contact:
Marianne C. Naafs-Wilstra
Achterdijk 85, 3985 LA Werkhoven
Netherlands
tel/fax: + 31 343 551969. e-mail: mcnaafs.vokk@wxs.nl