Talk presented at ICCCPO conference in Oslo, Sept 2004

I would like to present the schooling program organized by our Spanish federation since September 2002. It is financed by a private initiative. This program intends to solve, to some degree, the schooling needs of Spanish children with cancer, whose regions do not attend to these needs adequately. And it will run until the attention is properly covered by the public institutions. In this presentation I would like to explain not so much the program in itself, but the different steps we took to develop the program.

There are members of our Federation in most regions of Spain except the western regions and the Canary Islands. We are trying hard to establish them in every region. But sometimes it is very difficult because there are no specialized centers, or because the region is very big and the children live far away from each other.

The different regions of Spain have a high degree of autonomy to decide how to attend to the needs of the population in health related matters, education and social welfare, especially for small groups of the population like children with cancer. That is why one of the federation’s main priorities is that all children with cancer in Spain should have the same opportunity for survival and the best quality of life - independent of their place of residence.

This schooling program was developed due to the fact that many regions were not meeting the schooling needs of the children. In areas with no parents’ association, the federation runs the program directly. Where there are parents’ associations, it is a combination of resources between both organizations.

Aims and development of the program

Firstly we needed to demonstrate to public institutions the needs of the children diagnosed with cancer, so we conducted a pilot study.

Once we recognized the needs and factors involved, we developed the standards of a schooling program to cover the needs from diagnosis till full return to school.

We investigated what really happened with the school attention of these children in the different Spanish regions.

We developed a schooling integration program at national level to cover some needs that nobody was attending. It’s impossible to cover all the needs as it would be very expensive.

I. Pilot Study

The objectives of the pilot study were:

- to collect data about the child’s school activity from diagnosis until his full return to school

- to compare his school achievement prior to diagnosis and months after his full return to school

- to find influencing factors and make conclusions

- to develop standards for a schooling program for children with cancer.

Characteristics of the pilot study:

Two comparison tables:

Period not attending school/achievement

In the first table the factor we studied was the period not attending school. In those years children were hospitalised for longer periods and we can see that there were a high percentage of them not attending for at least the whole school year. No attendance is a risk factor for poor achievement but not the only and maybe not the most important.

School activity during treatment/achievement pre-diagnosis

In the second table we studied two very important factors:

- school activity of the child during treatment

- pre diagnosis achievement

We can see that if the child continues his school activity and this activity is programmed by his school of origin well-coordinated with the hospital and home teachers, his achievement will remain as good as prior to diagnosis or even better.

However, if school activity is rare or not well coordinated with what is done at the hospital and at home or has no relationship with the school of origin the achievement worsens both for good and not so good students.

Conclusions about intervening factors

Family motivation towards school activity during treatment: the family needs to realise that, even though the child has a serious illness, his life needs to continue as normal as possible.

Child’s attitude and achievement prior to diagnosis: some children (especially older ones) are not very keen on school activity and sometimes the illness can be an excuse to quit anything related to school. If this attitude combines with poor motivation by the family, the risk of failure is very high.

Written information for schools about the illness and schooling needs of the child is very important / essential.

Atmosphere at hospital school: it is not a therapeutic game but it is not a normal school. Maybe the achievement is not so important as to keep school habits and the relationship to these activities, to prepare work when the child is at home.

Coordination between school/hospital school/home teacher. It is essential that the child sees the work as a continuity supervised by his home school and that his work has a meaning.

Home teacher not a volunteer. It gives a formal aspect to the work. We are not entertaining the child. We are helping him to cover his school program. Mostly it is easier for children to work harder at home than in hospital.

Undesirable variable: we are sure that many of the results of this pilot study were influenced by the  interviews we were holding. Our interviewing the families and the teachers changed attitudes and promoted coordination which influenced better results.

II. Standards for a schooling program

Four important agents that need to be well coordinated:

1. Hospital school (brings a normal element to a strange/hard situation)

- motivates child and family in a moment of shock and uncertainty

- contacts with school always with permission of the family and gives written information directly or through the family.

- needs creative/flexible atmosphere to stimulate

2. School of origin (It is the real thing; hospital school/home teachers are exceptional elements while the child cannot attend school.)

- needs written information: They need to know about the illness, the treatment, how to treat the child, how to inform the classroom, etc.

- coordinates/programs activities: It is essential that the students school which knows his school level develops a realistic program that the child will be able to accomplish in his actual treatment situation.

- promotes relationship with peers

- prepares child’s return to school

3. Home teacher

- needed until return to school

- activities coordinated with school and hospital

- not volunteer

4. Family

- motivates child towards school activity

- keeps close contact with school

- helps to create an atmosphere for home teacher

III. Comparative study on how the different Spanish regions are covering schooling needs of children with cancer

We analysed three elements: written material, hospital school and home teachers:

Written material for information of the schools.

- Different booklets had been edited through the years by parents’ associations of different regions. Some had outdated information.

- It was decided to have a national guide for schools with revised information of new treatments and needs.

Hospital school

- almost every children’s hospital in Spain has a school

- but there were great differences among them with regard to activities, number of teachers, attention given when child was isolated

- coordination between hospital school/school of origin was practically zero in most cases.

Home teacher

- Only two Spanish regions had by law home teachers where the child was studying the obligatory curriculum

- The rest covered some cases through volunteers of parents’ associations or other NGOs. In some occasions local public institutions provided the service out of goodwill.

Program of the Spanish federation at national level for schooling needs not yet covered by public authorities.

To give a minimum coverage according to the standards indicated we pointed out three major necessities:

- information guide for schools

- home teachers

- coordination between teachers involved

Information guide for schools

- It is a very complete guide. with a chapter dedicated to the illness and treatment

- another chapter about how cancer affects the child depending on his age.

- then there is a chapter about the parents, another for siblings

- one special chapter for the terminal phase

- and at the end a vocabulary with the most frequently used terms.

Home teachers and coordination

Another problem was the need to have home teachers and to coordinate the work the child did at hospital and at home with the guidance of his school of origin.

This service is running since September 2002

The number of children attending throughout Spain:

    school year 02-03 ................. 23

    school year 03-04 ................. 32

Development of the program

The first thing we did was to hire a national coordinator with the following tasks:

- Those regions without the public service of home teachers can demand this service to the coordinator of the program. Demands come from parents’ associations, school hospital or directly from the family.

- The coordinator contacts the family and the school of origin directly, sends the information guide and finds a way to cover home tuition (first demanding the service to the public authorities, and if this doen’t work, paying the teacher directly).

- The coordinator does a follow up of each case until the child returns to school.

Looking to the Future

The Spanish Federation program is designed to cover gaps in services provided by local authorities to cover schooling needs of children with cancer. We look for a future where all schooling needs of children with cancer are covered by law according to the right of every child not to interrupt their tuition due to his illness.

When existing, actual regional laws only cover schooling needs of sick children during obligatory tuition (6 to 15 years old). We look for a future where the law covers the needs of children from 3 to 5 years old and adolescents from 16 to 18 years old.

Some children will still need special help after returning to school. We look for a future where children will be helped to keep the same level as their peers.

Some children will have long term effects which will hinder their intellectual performance. We look for a future where children have a close follow-up after the treatment so that these problems are detected and rehabilitated (if possible) as soon as they appear.