1. When diagnosed with childhood cancer

The meaning of education

Difficult treatments and long-term hospitalisation sometimes cause developmental and psychological problems for children. Children tend to undergo anxiety that they might be left behind academically and socially, and have no chances to improve their social skills because of their limited experiences. It is education that can solve these problems.

Education for hospitalised children has three important and special meanings:

- Education will help children keep up with school studies. Many hospitalised children are behind in school studies because of their frequent absence. In-hospital schools can provide individual instruction according to the children's particular needs. 
- Education will support children psychologically and empower them to fight against their diseases. Education can provide children with "I can do it" experience and enhance their self-esteem and self-confidence. It can even foster a feeling of self-control over their physical conditions.
- Education can also encourage children's psychosocial development. Teachers will arrange many programs, which will broaden children's experiences and increase their social skills.

Therefore, education is a key to improve QOL of hospitalised children.  

Communication with the regular school at the beginning of the hospitalisation

Keeping in touch with the homeroom teachers and classmates at the regular schools will psychologically support children undergoing painful treatment. In order to maintain a good relationship among children, parents and the regular schools, the proper initial action should be taken. Firstly, parents do not have to explain everything about the child's condition to the school. Parents can simply tell the school about the necessity of the hospitalisation and temporary absence from school. Later, when things have settled down, the school can be provided with further information. At that time, priority should be given to the will of the sick child. What information is told to the school should be discussed among children, parents and medical staff. It would be best if parents arrange a meeting between schoolteacher and medical staff. 

Opportunities to study in the hospital

At the beginning of a period of hospitalisation, medical staff must explain the importance of receiving education even while in the hospital. Education for children during hospitalisation is provided in one of the following places:

- At a special school for the health-impaired adjacent to a hospital
- In a classroom that a neighbouring elementary or junior high school has opened in a hospital
- In a visiting class by a teachers dispatched from a special school for the handicapped

If children want to attend an in-hospital school, they have to go through the formal process of transferring from their regular schools. If children are diagnosed with cancer, parents should visit the regular school or the counselling service of the local board of education to consult about education during hospitalisation. If there is no in-hospital school, parents can ask the local board of education to open a new in-hospital school with the help of the medical staff.

How children's homeroom teachers provide support 

Children's strong desire to go back to their regular schools enables them to fight against cancer and retain control of themselves during painful medical treatments. Therefore, homeroom teachers play an important role in supporting children. Acquiring necessary information, they should understand what the children and parents want the school to do and promote co-operation among other teachers for the children. Paying careful attention to the children's privacy, homeroom teachers should give proper information to the classmates and their parents and discuss how they can support the children. Teachers should keep in mind that the children are still members of their class even though they are in the hospital and don't come to class.

Relationships with parents of classmates

Parents of children with cancer sometimes feel awkward about getting along with parents of other children as they did before the diagnosis. They may be obsessed with the " Why only my child? " question and feel isolated from other parents. If the situation permits, parents need to be open to communicating with others and try to acquire understanding and support from them. Asking for help is the first step in building good co-operative relationships around children with cancer.

Communication between the regular school and the in-hospital school

Many hospitalised children are behind with their school studies because of frequent absences. In-hospital teachers need to collect necessary information from the regular school in order to identify the individual needs of the children. Speaking with the regular school from time to time, in-hospital teachers can build a bridge between the hospitalised children and the regular school.

Care for siblings

Brothers and sisters of children with cancer often feel lonely because their parents spend a lot of time at the hospital. Sometimes their loneliness and anxiety cause emotional problems. Many siblings may understand the situation. As they will also be very worried about their sick siblings, it is essential to properly inform the siblings of their diseases. Parents should ask medical staff and schoolteachers (or day care workers) to pay careful attention to the siblings. It is necessary to form a support network for the siblings as well.

2. School education during hospitalisation (after treatment starts)

School education in the hospital

The contents of the education at in-hospital schools are basically the same as those at regular schools. If children are unable to go to the in-hospital school, a teacher will directly visit the children and teach them at their bedside. Studying develops a sense of self-efficiency in children and school activities will enhance the children's motivation to fight against their diseases. Teachers at in-hospital schools should provide them with individual and flexible educational programs according to their particular needs, and give opportunities to try various activities, such as work-study and collaborative work, within the restricted conditions. Teachers need to pay special attention to the children's psychology as well as physical conditions. Needless to say, collaborative work with medical staff and other support resources is essential for teachers.  

Relationship among the patients

Hospitalisation separates children from their families and throws them into the "small world" of the hospital. Usually hospitalised children are strangers to each other. The in-hospital school should provide children with the opportunity to make friends with each other. Children will share their interests, hopes for the future, and sometimes share and console each other in their anxieties and pains. Through such peer relationships, children develop their social skills. However, sometimes children exchange incorrect information, which may increase children's anxieties. Special attention should be paid to the relationships among children. 

Communication with the classmates of the regular school

It is not an exaggeration to say that friends can be the strongest support resource to empower the hospitalised children. Before informing the classmates about children's diseases, the teacher should ask the child and its parents what it should be told and how. If the classmates want to visit the children at the hospital, they should ask in advance if it is okay with the children's parents. If the children have alopecia or medical scars, or when the children are not informed about their own diseases, classmates' visits are sometimes unacceptable. However, letters, emails and taped and video messages are always welcome and cheer up the children. It is important to consider the children's physical and mental conditions. The teachers should continue to send or bring class newsletters, which will please the children more than teachers can expect. When a class shuffle takes place, special consideration for the children is required.

Children who cannot attend in-hospital schools 

If there is no in-hospital school, the regular schoolteacher is expected to carry out more essential functions to support the children. They should make individual education programs for them and remember to be the key connection between the children in the hospital and their support resources at the regular schools. It is desirable for teachers to visit the children in the hospital as often as possible and the regular school should back up the teachers' visiting hospitals. 

3. When returning to regular schools

Communication between schools and families

A successful return to school is one of the highest hurdles for children with cancer. They feel anxiety that they can not keep up with others or that classmates will not except them as before. School staff may also be confused about accepting them. Parents and school staff should exchange as much information as possible, including the doctor's advice. It is beneficial if parents, school staff and medical staff can have a joint meeting. At that time, children's participation is desirable. Schools should understand that the children tire easy and are extremely sensitive to viruses, or that they may sometimes be late for school or leave school early for medical care at hospitals. The homeroom teacher should give a talk about the children to their classmates in advance of their coming back to school. Especially if the children have changed in their appearances, the teachers should explain the reasons and develop sympathetic understanding of the children. People around the children can not exert too much effort to support the children's smooth return.

What an in-hospital teacher should prepare for the regular school teacher

It is important for the in-hospital teacher to pass a written record, which clearly describes what the children have studied, their interests, and their motivational level, to the regular school. The information will make it easier for the regular schoolteacher to understand the children's school life in-hospital. In case children can not attend regular school immediately after hospital discharge, both teachers should make a special educational plan for them, such as sending study material for studying at home. The most important thing is, to never leave any gaps in school studies. 

Co-operation between regular school teachers, in-hospital school teachers and medical staff

It is important for medical staff and the in-hospital schoolteacher to closely co-operate with the regular schoolteachers, respecting each other's expertise. Especially when leaving the hospital, children have to go through great changes and need well-organised support. The in-hospital schoolteachers should take responsibility for building bridges among the medical staff, the parents and the regular schoolteachers. 

Life after returning to regular schools

Heartfelt sympathy and support shown by teachers and friends encourages children to overcome their handicap. Setting personal goals and joining enjoyable activities are also effective in enhancing children's motivation. Some children are sometimes teased or bullied about the change in their appearance. Paying careful attention to their mental and physical condition, teachers should plan activities that allow the same participation as others, as long as the activities are not too hard for them. Teachers must not freely pass on to others information related to the children's diseases that should be kept secret.

Relationship with other children's parents at the regular school 

Support from the classmates' parents is necessary for the children's smooth comeback. Some parents of children with cancer may hesitate to communicate with other parents. Sharing information about their child's disease can help to avoid misunderstandings of other parents, and help to prevent prejudice against a sick child.

Care for siblings

Siblings may face being teased about their sibling's diseases. In advance, the parents should talk to both the children and the siblings about how to deal with other children in difficult situations. If the siblings know what information has been given to the classmates, it will be easier for them to manage when problems occur. Parents may have a tendency to focus on the sick children who have just returned home and are starting school again. However, it is also important for them to pay adequate attention to the siblings. If necessary, medical staff and teachers should respectfully remind parents of this.

4. Education for children who need special attention after treatment

Children who need special attention after treatment

In some cases, it is still necessary to surgically remove or amputate a child's body part. It is often the case with children who underwent radiation exposure or chemotherapy that they suffer from some kind of disorder after the treatment. Schoolteachers tend to be so afraid of accidents that they may restrict such children's activities. Children with disorders want to be treated in the same way as others. The best possible education should be individually planned according to the advice of medical staff. The educational environment should allow children to develop their abilities to the highest degree.

Children who need mental support

Some children who have recovered from cancer say," I had more problems after the treatment than during treatment". During hospitalisation the children are constantly surrounded by supportive people, but after the children leave the hospital and return to their regular schools, people around the child do not always thoroughly understand the child's situation. Especially adolescent children need support resources. They should be informed of the fact that hospital social workers, paediatricians, and the "Children's Cancer Association of Japan" are always available to assist in any way they can.  

5. Education for terminal cancer children

Unfortunately, there are children who still cannot be cured, and education has an enormous role to play for these children. When it becomes evident that the child is in the terminal stage, education providers can participate in making the children's remaining days as good as possible. Care for the sibling is also indispensable.

6. Conclusion

We would like to emphasise how important the making of a good collaborate system around the children is, and how much education can empower children with cancer during hospitalisation. Even when they are in the hospital with cancer, they are children and growing and developing, and need education. We really hope every child hospitalised with cancer will have the opportunity to be educated, and that no handicaps will be caused by the experience of being hospitalised.
We hope that all people involved will continue to discuss and exchange ideas. We hope that our guidelines will be modified and improved, and we hope that many people will read and make use of these guidelines.
We, as adults, should recognise and teach children how precious and fragile human life is and how important it is for us to support each other.
The Children's Cancer Association of Japan, established in 1968 by some bereaved parents, is a support organisation for children with cancer and their families. At present, we have 14 branches in the country, and there are about 4000 members (of those members 92% are patients and their family, and 8% are medical staff).
Our activities are:

- Providing counselling services by professional doctors and social workers
- Conducting self help groups sessions for long term survivors (Fellow Tomorrow) and grieving parents
- Coordinating volunteers for tutoring and playing with children in the hospital
- Providing financial and emotional support for families and research projects related to paediatric cancer
- Publishing newsletters (quarterly)
- Registration of paediatric cancer cases; CCAJ has been in charge of this program since the foundation of this association. The number of cases are reported from 6 local divisions to headquarter (Tokyo)
- Coordinating our 14 branches, including local programs 
- Supporting summer camp for children with cancer currently under treatment and/or survivors with true diagnosis
- Managing three residential houses for parents 
- Membership application is always available.

Children's Cancer Association of Japan 
6-24-4 Kameido Kota-ku
Tokyo 1360071 Japan
Tel. :+81 3 3638 655.   Fax :+81 3 3638 6553
e-mail : nozomi@ccaj-found.or.jp.   http://www.ccja-found.or.jp/