Back to school: School reintegration after childhood cancer

Tanja van Roosmalen & Claire Assman-Hulsmans

Orthopedagogical Centre, University Medical Centre Nijmegen (The Netherlands)  

The following lecture was presented by two teachers from Holland at the SIOP/ICCCPO meeting 2000 in Amsterdam:

Anna’s mother:

We brought our sick child to the hospital and gave her life in the hands of strangers. Hoping they would save our Anna. We felt so helpless. Anna had to go through all these terrible treatments and there was nothing we as parents could do.

Anna got well and after several months we could take our child home again. But she was not our Anna anymore. It was not the physical changes that made her different. No, her whole personality had changed; she cried a lot, she was demanding and performed badly in school. We had a strange child on our hands and nobody could help us. We felt as if we had lost a bit of our daughter to the disease.

With increasing survival rates in childhood cancer, more emphasis has come on improving the quality of life. School functioning is an important aspect of quality of life, because children spend many hours a day in school. And for a child treated for cancer school is of great importance.

During treatment, school tasks are a welcome distraction. School is their grip to everyday life, which they were forced to leave when the diagnosis was made. School has a social function. Each child is one of many, part of the group.

Also, school appeals on the healthy part of the child. And most important, school and school performances give prospects to the future. Therefore, to improve quality of life, it is important to focus on school reintegration of children treated for cancer.

Cancer and its medical treatment have an enormous impact on the child’s life, both physically and emotionally. And sometimes children are even faced with cognitive consequences. Children shouldn’t be coping with these problems alone. They need help. In the Netherlands, university hospitals more and more recognize the need for school guidance for children after cancer treatment. In the University Medical Centre of Nijmegen (The Netherlands), we are part of a specialized team that focuses on school problems in children with cancer.

Peter, a schoolteacher:

Michael had missed school for some time. I thought he had a bad case of the flu. After three weeks we received the message that Michael had leukemia. This was a complete shock to me. I thought Michael was going to die.

We informed the class. This was difficult because the children had so many questions I could not answer. I told the class it was best not to contact the family right now, because Michael was very ill and the family had a lot on their mind right now.

After two weeks Michaels mother called me. She told me Michael responded very well to his treatment. But she was angry with me, because the school had not showed any compassion. I realized I made a mistake in not communicating with Michael and his parents. I was afraid…

Communication

Good and frequent communication between the three worlds that a child with cancer lives in is a crucial condition for school reintegration: the family, school and hospital.

School reintegration is a process that should start soon after diagnosis. The first step is to make sure the child’s school is informed about the diagnosis and gets all information needed. Usually the parents contact the school to inform them. It is very important that parents, school and hospital arrange an agreement on certain practical issues, such as:

·     Who is the informant in school?

·     What information can be told to the classmates and their parents?

·     Can the child attend complete school weeks?

·     Is the child permitted to join the gymnastics classes?

In the Netherlands, hospital schoolteachers play an important role in the communication between the three worlds. They have contact with the medical staff, the parents and the teacher of the school of the sick child.

Recently, most hospital schools have put together an information package for schools. This package contains information about the hospital school. Furthermore, it contains information materials of the Dutch Childhood Cancer Parent Organisation and of our centre: two books: ‘A student with cancer… now what?’, which is a workbook for schools and the book ‘Childhood cancer – chances in education’. This package is a good addition to the information given by the child’s parents.

Consequences

With information and good communication the expected school reintegration can be prepared. The school can prepare itself for possible consequences the child might suffer from caused by the disease and treatment. These possible consequences consist of three components, which are inseparably connected: physical, emotional and cognitive. These consequences can be temporary, long term or even chronic. Some consequences are more severe than others. We’d like to go through a few examples.

Physical consequences are dependent on the specific disease, the treatment and possible complications. Common physical consequences are:

·     Reduced resistance: especially during treatment children are very susceptible to infections. If many school children have the flu, the child treated for cancer is forced to miss school.

·     Motor problems: caused by e.g. a leg amputation or a neurological problem. The seriousness of the problems varies from not being able to walk to having writing difficulties.

·     Hormone changes: some children need supplements to substitute certain hormones. As a result they can for instance have problems coping with stress.

·     Fatigue: this can be temporary, but is also known as a chronic problem.

·     These physical consequences have direct impact on school functioning and school performance.

Some physical consequences cause emotional problems, like the loss of hair.

Emotional consequences are more or less found in children with cancer, depending on a lot of factors like age, coping style, family support, etc..

·     Many children suffer from relapse anxiety.

·     Depending on the physical condition, children have to learn to accept their handicap. This process can take years and can cause new problems in every new life phase.

·     In a way children treated for cancer feel different; different from who they were before and different from other children. If they don’t feel accepted by their peers, they tend to withdraw from other children.

Marian (17):

Two years ago I was treated for a brain tumor. I had an operation, chemotherapy and radiotherapy. After the treatment I wanted to go back to school as soon as possible, because I didn’t want to repeat a whole school year. But it didn’t work out the way I planned it. I had trouble concentrating in class. And I was not able to write my notes while listening to the teacher. By Wednesday I had become so tired that I’d rather stayed in bed for a day. In school, the teachers said my motivation was very poor. I started to doubt myself. I lost interest in school and wanted to drop out and look for a job. My whole future seemed to collapse like a house of cards…

A subgroup of children treated for cancer has to deal with cognitive consequences.  Children who are particularly at risk to develop these problems are:

Children treated for a brain tumor. The tumor itself, the high pressure it can cause in the brain, and the intensive treatments are infamous.

Young children. The younger the child, the more it is at risk for learning disabilities.

Children treated with cranial irradiation like children with a brain tumor, leukemia and Non Hodgkin lymphoma. Fortunately, this treatment is now less used then twenty years ago. But especially for children with certain brain tumors a better alternative is not yet available, although the radiotherapy itself develops to a more sophisticated method.

The largest group of children we see in our daily work with school problems are children treated for a brain tumor. Learning disabilities are not always apparent or, if they are, often not identified as a consequence of the disease. Sometimes they become apparent years after medical treatment.

Timothy’s mother:

At first, we just wanted to conquer the disease. Make sure we wouldn’t lose our child. After an operation and chemotherapy, Timothy needed radiotherapy to destroy the last cancer cells in his brain. The doctor told us that the radiotherapy could cause learning problems in the long term. We realized that conquering the disease was not the end of our struggle. This therapy could effect Timothy’s future. But it was either that or no future at all. We had no choice.

After six months, Timothy went back to school. In the beginning everything seemed fine. He enjoyed school. But after a while, he couldn’t keep up with his classmates. He had trouble concentrating, forgot many things he learned and was bad-tempered. When he came home from school, he had no energy left to play. All he did was lie down on the couch and watch television. Although he was so tired, he slept poorly. I often had to sit next to his bed for hours. And his friends didn’t come over to play anymore.

His schoolteacher didn’t understand. She said: ”if Timothy is cured from his cancer, I can’t treat him any different than his classmates. Maybe you spoil him too much.”

These are the most typical cognitive problems:

·     Attention deficits:
Many children have difficulties maintaining their concentration in class and during homework. Instead of overactive behavior, these children tend to gaze at their paper or out of the window.
Risk group children also have problems with selective attention. This means that they have difficulty to give priority to one source of information and block other sources. Like Marian, who couldn’t write her notes while listening to the teacher.

·     Memory problems:
Memory problems are often found in children. They have great difficulties remembering new information, especially information out of a certain context, like capital cities of the world or multiplication tables. Memory can be divided in several components; there is auditory memory, visual memory, short term memory, long term memory, etc..
In order to help these children it is important to find out which aspect or aspects of the memory is damaged.

·     Problems in information processing:
Older children have to process a lot of information at the same time. They have to study a number of book chapters for one test. The children in the risk group have difficulty finding the core of a subject and discriminate between main and side issues.
You can imagine what happens if they write a summary… they rewrite the whole text.

·     Lower speed of processing:
Learning takes more time. If there is not enough time, assignments are unfinished, children make more mistakes and miss instructions.
Some children have to tiptoe for years, until their battery is empty.

These cognitive consequences are all components of general intelligence. Therefore it is often said that these children deal with a decline in general intelligence.  You can imagine that cognitive problems can cause new emotional problems if they are not recognized. Physical problems can make the situation even worse.

All in all, school reintegration doesn’t automatically mean: pick up where you left of.

Problem approach

But then your next question is: ‘what can we do about it?’

There is not one right answer to this question. There is not ‘a’ child with cancer. All children are unique and cope with their own consequences, some minor, some major.

It is important to evaluate each child separately and try to map the child’s needs as well as the possibilities of the environment, that is his family and school.

The problems can be approached on several levels:

·     Class level

·     School level

·     Beyond school level

·     In class:

Children can be given extra time to make tasks and tests. It is not the speed that counts, but the result.

Children can be given shorter tasks: not a whole page of math problems, but half a page: quality over quantity.

After verbal group instruction, the teacher can repeat the instruction for the child, possibly supported with visual instruction (with a task card or framework).

A computer can help children with motor problems.

To learn a foreign language, a tape player can be used to help learn the pronunciation. It also enables the child to remember words both auditory and visually.

To help children discriminate between main and side issues, the so-called ‘red line’ can be given with keywords or a summary of a lesson.

·     School level:

If this help is not sufficient, a remedial teacher can help the child in several individual sessions. Or advice can be asked from an in-school physiotherapist or speech therapist.

Homework coaching can help the older students.

·     Beyond school level:

Sometimes guidance is necessary from outside school. Hospital schoolteachers can give this guidance.

However, since school problems are often very complex, a combination of physical, emotional and cognitive problems, a thorough psychological evaluation is required by an educational specialist or child psychologist.

For special school coaching in The Netherlands there is the possibility to call in long term coaching from special education schools.

But in some cases, the child needs more than a school can offer and special education is necessary.

Finally:

In our opinion, it is important that medical specialists recognize the risk for late effects of cancer and the medical treatment on a child’s development, including possible school problems.  Therefore, hospitals should provide the facilities to give school guidance for children after cancer treatment. We owe that to our children!