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The role of school education for independence of children with cancer and childhood cancer survivors
~Relation to education of disease children~
 

Mr. Kengo Nishimaki, incorporate administrative agency, National Institute of Special Needs Education

 

 

Introduction

When school age children develop childhood cancer,
Children and their parents mostly often began to concern about school education, ensuring they succeed in achieving an initial treatment and escape from fatal crisis after entering pediatric cancer hospital. Under current authority involved in school education, it is not allowable to send teachers to hospital. Thus, disease children have to move to school in hospital, said differently, transfer to another school for them and receive special support education. Referring to special support education, especially, it is called “Byoujaku Kyouiku” which means education for disease children in hospital.
In other words, children with childhood cancer should go to school in hospital.

For example, according to questionnaire survey by subcommittee for childhood cancer study group on Quality of Life, there is the case of one hospital registered as research participants institute for children with childhood cancer in hospital under favorable condition. In reality, there is alternative education facility such as special needs school, home-visiting teaching or its branch school or class. What is worse, there is no assurance of school education for them.
School-education in hospital as they are called.
It is a usable name if school-education in hospital is established in not school but hospital. This word is not accurate law term. Basically, high school is unable to provide this service because of their territory outside of elementary and secondary school. Due to this reason, disease student 15 years and over can’t go to school. Quality of education is widely ranged from special-needs school to visiting class depending on school system in hospital. Distribution of teacher quality and utilities including educational materials are different in each school. School preferably provides better distribution of teacher quality and utilities in comparison with hospital 2).
1) Questionnaire of patients with infantile acute lymphocytic leukemia and their families by JACLSQOL subcommittee, 1st report
Nihon Shoni Gakkaisi Vol.115, Issue 5, 918-930, 2011 The significance of school in hospital and How can we treat long-term absent student?
Research agenda: Study on education for disease children in Japan. View on collaboration with disease education and school health. National Institute of Special Needs Education report.

From the standpoint of healthcare professionals, however, the issue is limited in educator and school that care for children with childhood cancer and there is generally little discussion focusing on quality of education among schools when we talked about the increase of quality of life for children with childhood cancer.

Recently, Childhood cancer has been added to sectoral policy on secondary promotion for cancer countermeasures basic plan based on Cancer Act control. There was no enforcement of measures on primary plan, so patients with childhood cancer their families and people associated with childhood cancer didn’t most often obtain any benefits. Primary reason is as follows: 1) Cancer specialized hospitals except university hospital and some cancer centers don’t mostly often treat children with childhood cancer. 2) As for special facilities for children with special needs such as children’s specialized hospital which practically treat most of childhood cancer patients,
It is difficult to achieve the requirement for cancer specialized hospital. 3) Registration of childhood cancers in their local communities don’t directly link to conventional registration of childhood cancer such as registration by Japanese society of pediatric hematology/oncology and research project on specific childhood chronic disease.

Therefore, we should have selected specialized childhood cancer hospital, built on high quality medical care and promote palliative care.
We should have provided financial support such as necessary expenses involving playroom management not only to implement consultation for childhood cancer patients but also to improve treatment environment. When specialized childhood cancer hospital was rebuilt, some schools in hospital were lost. We should have conducted a comprehensive discussion including school education and life support in more detail when considering　these issues

For the purpose of providing an environment and quality improvement during hospitalization and promoting quality of a unit of hospital, it is important to increase the distribution of child specialist and enhance the quality of playroom. Moreover, it is important to set up the utility from the viewpoint of educational facility. Here I show the role of school education closely related to independence support for children and adult survivors of childhood cancer.
 

2.　Support for children with childhood cancer on the viewpoint of special needs education.

According to Research into Treatment for Specific Child Chronic, 12802 malignant neoplasm patients were registered in 2008 (Heisei 18). Among them, pediatric cancer correctly termed malignant neoplasm (Ref 3). Annually total number of 2000 patients has been newly-registered. This is equivalent of one in 1000 children below the age of 18.
Reference 3: Dr. You Matsui, research project leader,
Grant-in-Aid for Science Research on Raising Next Generation Children: Conquering children disease.
“Study on registry, management, analysis, and information sharing of child chronic disease”, Health Labour Sciences Research Grant, Heisei 22, comprehensive research project report in part, 2011, 3

 

Due to recent dramatic improvement of childhood cancer treatment such as chemotherapy, radiotherapy and surgery, expecting survival rates of some leukemia patients achieved more than 80% by using these intensive methods. However, we are deeply concerned about the late effect of cancer treatment in the long term. Recently, it has been known about the impaired cognitive function because of adverse effect on central nervous system by radiotherapy. Cognitive function plays an important role in the quality of daily life. Therefore, it is a sensitive problem when making a decision the result of best survival rates or the quality of life. (Ref 4) Satomi Funaki, build on framework of education support system for children with childhood cancer.
Shouni Kenkyu Vol70, No.4, 467-471, 2011. Japan Child and Family Research Institute (JCFRI), Nihon Kodomo Siryou Nenkan 2010, KTC chuo Publisher; 2010.

We have experienced a great success for special needs education that contributed to improve an education support for children with a developmentally disability. However, even teaching stuffs didn’t know the fact on special needs education for children with disabled cognitive function caused by childhood cancer treatment.

The number of student absent from more than 30 days was 24291 elementary school students and 20826 junior school students in 2008( Heisei 20).
Unfortunately, this number is steady even now.
As of May 1st, 2008 (Heisei 20), the number of student at special needs elementary school was 35256, junior high school students were 27046.
Considering the number of present student at special needs school, it is amazing to know excessive absentees because of illness.

In order to understand these situations precisely and collect accurate absentees, we emphasize the discrimination the difference between disease absence and no-attendance at school.
The number of refusal students at elementary was 22703, junior high school students were 104135. (Ref. 5)
Due to failing to reentering school support, unfortunately, there were many children who resulted in refusing to go to school.
School education can support developmentally-disabled children. However, this system doesn’t apply for children with impaired cognitive function, much less quality of assurance of education in a similar way because they are childhood cancer patients.
Ref. 5) Special Needs Education Resources (2009, Heisei 21). Elementary and Secondary Education Bureau, Division of Special Needs Education at MEXT( Ministry of Education , Culture, Sports, Science and Technology), 2010, April
 

 

3 Framework on supporting for disabled and disease children with special needs education

School education law amendment in 2008(Heisei 18) developed a topic about some new mechanisms for school to promote special needs education from 2009 (Heisei 19), April
One of the solutions is to take advantage of special needs school. As of May 1st, 2009 (Heisei 19), There were 1030 special needs schools, 85400 educators, and 42067 special needs classes, 45001 educators throughout the nation. The ratio of certificate holder of education needs teacher was 69.5% of special needs school and 31.6% of special needs class. In order to utilize educational specificity supporting for disabled and disease children as a social resources, special needs education school was defined as a pivotal role.
It makes efforts to provide necessary information and support upon request.　Special needs school which became a comprehensive school, could respond to children with duplicate or multiple damages. Education coordinator at special needs school nominated by principal played a central role in promoting for special needs education in local area, coordinating with relevant organization of community welfare and medical service. Coordinator is an important partner to cooperate with educators and teachers.
When the relationship between relevant organization and education needs to be strengthened, individual support education is important. From a long-term standpoint from infancy and childhood to graduation, relevant parties such as medical service, health, welfare, education and labor jointly collaborated to conduct an effective service for individual needs corresponding to disabled children. (Ref.5). In other words, this is an endorsement in agreement with relevant organization to conduct the needs of children with disability, the sharing role of supporters and organization, as well as the contents of support and evaluation of effectiveness. According to current curriculum guidelines, it is mandatory to make this document. Healthcare professionals use this manual in children’s school life when considering careful attention. In on-site of school, educators usually obtain medical information through guardians, so they should carefully choose their renewal one because of only fragments and inaccuracy. On the viewpoint of attentive teachers, they have useful medical information for school. Due to weak information transmission, the necessity doesn’t reflect upon medical service. Individual education support planning is a chance to conduct collaboration each other smoothly to put those measures into practice smoothly, conducting” collaborative education”.
Ref.5) Special needs education materials in 2009 (Heisei 21), Elementary and Secondary Education Bureau, Division of Special Needs Education at MEXT ( Ministry of Education , Culture, Sports, Science and Technology)
 

 
4 Enlightenment on education for disease children
Support booklet: understanding of disease children

To promote reentering school of childhood cancer children, it is necessary to know the framework within education of disease children well. Basically, long-term absentees due to disease are out of education support and it is known that school education can’t compensate the gap and conduct direct teaching for children unwilling to go to school. Therefore, it is generally thought that they should disease anyway.
If disease children return to their previous school, it is needless to say that teachers and educators carefully prepare for individual education support planning to prevent them from falling into crack down of school absence. We wrote a support booklet called “For understanding disease children” with National Institute of Special Needs Education and National principal’s association of Special Needs education school for disease children education, and endure to enlighten understanding of disease children in elementary and secondary school.(Ref.7

Ref.7 support booklet for disease children “For understanding disease children”
http://www.nise.go.jp/portal/elearn/shiryou/byoujyaku/supportbooklet.html

This booklet was written for special needs school educators working in elementary and secondary school for disease children with the help of health care professionals and parents with disease children.
 When using search engine for support booklet, you will be able to view the top ranking, so everyone is accessible to this information. Currently, we provide these 14 support booklets involved in physical disorder, overview about mental illness, leukemia, brain tumor, allergy, heart disease, kidney disorder, obesity, epilepsy, and rare diseases such as muscular dystrophy, biliary atresia, xeroderma pigmentosum syndrome.
 

5. Advocacy: Build comprehensive support system in local community.
As aging society emerged from 1990’s, in order to prevent the state of being bedridden, it was proposed that an idea of comprehensive care system in local community. It is accompanied by explanation that relevant people jointly work and provide these social care services such as social activities promoting health, medical service, home care and rehabilitation by integrated and systematic way in response to the needs of people living in the area, while focusing on comprehensive issues including downsizing of medical expenses for elderly people, prevention of health and welfare of elderly people.

People living in the area should engage in work, collaborating health, medical service and welfare. When setting up for necessary facilities, resources of community health, medical service, care, and welfare are jointly integrated and managed. Implementation theory has recently developed into comprehensive care system from the standpoint of social theory.
According to Igai (Ref.8), current concept of health has been switching “medical model” to “life model”.
On the background of these situations, firstly, health care system suitable to the time of changing health concept is targeted for comprehensive care system because they are required for both community and comprehension. Secondary, the conversion of health concept is thought to be social welfare rooted in a wide-spread social support change movement during past three decades. Thirdly, before constructing community based care system, it is suggested that it requires divisionary professional division, fulfillment of social capital and response to cost escalation differing from conventional health care system.

We think that the idea is applicable for support to disabled and disease children. Looking back on the measure for childhood cancer, we must say that it adheres to the notion of medical model. As a sign of times, it is necessary to look at the whole picture of education with the introduction of idea of life model.

As stated in support booklet project, by utilizing the system of ICT（Information and Communication Technology）that can accumulates teleconference system information,
High special educator voluntarily wrote it within their working time by rotation with the use of individual experience at special needs school.

When considering educational system, unique idea, kindergarten in hospital that alternate and supplement child specialist, has come. It is legally possible to stream this system by means of financial resources relevant to school education.
To construct community based system, it is important to not only think overlapping of school education and life support for improving children’s environment but also to provide high quality of medical service in childhood cancer hospital and arrangement of care.
When children fall into long-term absence, school maladaptation, delinquency and dropout, most of the reasons are not hardness of children’s life caused by disability and disease but difficulties children and their family have are rooted in family, society and financial problems.
Most of these cases unlikely to resolve by the methods in medical services and education so life support is essential. Its support through information sharing is totally inefficient in reality because education, medical service, welfare are not jointly collaborated. Although we created an individual education support plan on site school, unfortunately, appropriate medical information didn’t transfer to the school from guardians under the personal information protection. In the same way, mostly often, the cases are that health care professionals didn’t know children’s school life. Information sharing between relevant people doesn’t work with the view to knowledge of disabled and disease children.
To construct community based support system for childhood cancer, someone involved in childhood cancer support needs to play a role in focus on providing information. As the number of individual education support plan for childhood cancer in community create more and more, It brings to promotion of networking on various social resources that accumulated in community, establishes a framework of life for disabled people to comfortably live in community. We believe that community based comprehensive support will be created in the process of solving these problems.

Ref.6) Guideline on education support system for elementary and secondary school students with learning disability (LD), attention-deficit hyperactivity disorder (ADHD) or high-functioning autism (HFA). Ministry of Education, Culture, Sports, Science and Technology: 2006 (Heisei 16), January.
Ref.7) Shuhei Igai, theory of hospital age, Yuhiaku. 2010