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Information for local environment when children and adolescents are diagnosed with cancer


Medical editor Lise Lotte Hoel
Pediatric Nurse
Oslo University Hospital

Counselor
Norwegian Cancer Society

General

This information is intended for the family, school, daycare/nursery school, and workplace to ensure that the child/adolescent and family do not lose their social network due to a lack of information or misunderstanding about the child's disease and treatment.

Cancer is a serious and life-threatening disease. Around 140 children (0-14 years) develop cancer in Norway every year. Seventy to 80% survive the disease. Most endure intensive and long-term treatment lasting from 6 months to 2½ years. The treatment causes side effects in varying degrees and requires regular contact with the regional hospital for checks and treatment.

The disease affects the entire family. Children/adolsecents risk reducing school presence and socializing with other children and teenagers. Parents may have problems maintaining work during the treatment period and the normal life of a sibling is more unpredictable.

Children and adolescents may believe that their disease is contagious and the disease is a result of their behavior. Small children may believe the disease is caused by magic and a result of not following rules or orders.

Children have the need to be informed about serious events in their lives and family. It is also very important that siblings are informed and have help informing their environment. The child and their siblings need age-appropriate knowledge about cancer.

An information pamphlet has been written for how information can be conveyed both verbally and written; the pamphlet was written in collaboration between the Pediatric Clinic at Oslo University Hosptial and the the Norwegian Cancer Society. The pamphlet is now used at all regional hospitals in the country.

Indication

  • Children and adolsecents with cancer.

Goal

  • Children and adolescents can live a normal life during the cancer treatment.
  • Children and adolescents maintain their social function and have a good quality of life after treatment.
  • The environment is informed about the child's disease and treatment.
  • Siblings obtain information and support from parents and health personnel.
  • Children with cancer treatment obtain basic instruction adapted for their level and condition.

Reference

Information pamphlet for school and environment when a child has cancer [Online]. 2004 [retrieved 7. December 2007]; Available at: URL:http://www.kreftforeningen.no/vp/multimedia/archive/00001/N_r_barn_f_r_kreft_1338a.pdf





Background

Good information and cooperation with teachers and daycare providers fosters conditions for contact with other children and adolescents during treatment and after concluded treatment.

Children/adolescents need basic education also during the disease period. Today, instruction is arranged to occur during the treatment time at the hospital, or at their local school when at home, either in class or small groups when needed. The treatment plan and the condition of the patient determines where the instruction will take place.

Patient Rights Act: Act 1999-07-07 nr 63;

The patient should have the necessary information for understanding their health status and medical help. Under 16 years of age, the parent or legal guardian should be informed. Between 12 and 16 years of age, the patient's wish to not inform their parents or legal guardian should be respected.

Regulation about child stay at a health institution § 15;

In sufficient time before discharge, the health institution should establish contact with the regional health enterprise if the child requires follow-up after discharge. This contact should occur in cooperation with the parents.

Primary School and Further Education Act 1998, revised 12.4.2002.§ 2.1 - 13-3a;

Children and youth have the obligation and right to public education. If they do not obtain satisfactory benefit, they have the right to special education. The township and county should fulfill this right.

Children in school-age years have a right to education during institutional stay.

 

Reference

Information model for school and environment when a child has cancer [Online]. 2004 [retrieved 7. December 2007]; Available at: URL:http://www.kreftforeningen.no/vp/multimedia/archive/00001/N_r_barn_f_r_kreft_1338a.pdf


Implementation

As soon as a diagnosis is made and as early as possible, health personnel must inform and cooperate with the child's social environment. All information is given in cooperation and with approval from the parents and child/adolescent.

Medical information to the school regarding the child's disease is given by health personnel with experience and knowledge about the disease and treatment, and with experience informing children. It is important to emphasize maintaining contact with the student who may often be absent from school.

The information model developed in collaboration between the Pediatric Clinic at Oslo University Hospital and The Norwegian Cancer Society is organized into three parts:
  • Part I - information, suggestions, advice and checklists for who the social environment should be informed, what they should be informed on, and who is responsible for conveying this information.
  • Part II - approval documents and letter for information from the parents, hospital school, and primary nurse to the social environment of the child.
  • Part III - drawings/transparencies with text for information for classrooms (young and older children)
The model is based on professional experience with what families and their social environment need of information, and how it is given.

Reference

Information model for school and social environment for a child who has cancer [Online]. 2004 [retrieved 7. December 2007]; Available at URL:http://www.kreftforeningen.no/vp/multimedia/archive/00001/N_r_barn_f_r_kreft_1338a.pdf



Follow-up

When the treatment is over and the child returns to school, he/she may have problems assimilating. A public health nurse is an important person during the treatment time and follow-up period, and can initiate measures if necessary.

Youth may become more attached to their parents in contrast to a normal relationship characterized by self-determination and independence. Both parents and youth may need support to let go.

Children/youth who have experienced disease and treatment need age-specific information about their disease, which is adapted for their age as they grow older, in order to work through what they have experienced. Health personnel who meet children and youth in connection with check-ups after the disease have an important role here. It is also important to inform the child/youth that it may take time to be in the same physical condition as before.

Children/youth who have delayed effects from treatment, especially those having radiation treatment for a brain tumor, require a great amount of professional support and follow-up. New professional information is needed for teachers and classmates when the child/youth changes to a new school.

The support society for children with cancer (SKB), www.kreftsyke-barn.no, arranges activities and courses locally and centrally.

The Montebello Center, www.montebello-senteret.no, holds family courses to facilitate contact between children, youth, and family in similar situations.

Reference


Information model for school and social environment for a child who has cancer [Online]. 2004 [retrieved 7. December 2007]; Available at URL:http://www.kreftforeningen.no/vp/multimedia/archive/00001/N_r_barn_f_r_kreft_1338a.pdf


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