what about school? - Ronald McDonald Learning Program

Transcription

T
U
O
B
A
T
WHA
SCHOOL?
Home
Intro/Start
Educational
Pathways
A resource for parents of
children, adolescents and
young adults with cancer
A collaborative Educational
Pathways Project funded by:
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
INTRODUCTION
Introduction
Where to Start
ORTANT
P
IM
T
S
O
M
E
H
T
K
IN
“I TH
ION FOR
ASPECT OF EDUCAT
S/IS
A
H
O
H
W
D
IL
H
C
E
TH
CER IS
EXPERIENCING CAN
Y”
PARENT ADVOCAC
A diagnosis of cancer in a child, adolescent or young adult can turn an everyday
world upside down. There are many medical, emotional, family, social, financial
and spiritual confrontations and considerations. The purpose of What About
School? is to assist parents and carers with the schooling and educational
implications of a diagnosis of cancer.
In this book we will endeavour to answer questions such as:
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How will cancer treatment affect my child?
How important is it to maintain schooling?
Who do I speak to?
What does the school need to know?
What areas will my child need help in?
The information has been structured to relate to all ages from early childhood to
young adulthood. This includes preschool, primary school, high school right
through to leaving the school system and facing University, TAFE, or
employment. This 2nd Edition of What About School? has been updated to
include content that is relevant for students in all school systems across Australia.
The titles used for education and health specialists and services can vary across
Australia. As such, general or hyphenated terms have been used as much as
possible.
For ease of reading, there will be times throughout the book when a child may
mean any child, adolescent or young adult anywhere along this age range from
approximately 3 to 24 years of age. In a similar manner when a parent is referred
to it recognises that sometimes the primary carer of a child may be a grandparent,
foster parent or guardian.
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WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
INTRODUCTION
Introduction
Where to Start
All information has been developed in consultation with doctors,
educational professionals and most importantly parents of children
who have experienced cancer diagnosis and treatment.
School is a child’s work and play. Outside the family environment it is
where a child:
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grows
explores
socialises
pushes boundaries
develops physical skills
develops mental skills
challenges their thinking, and
is guided
and hospital systems need to be negotiated and a new language of
medical terminology is faced. Most of this occurs at a fast pace as
treatment is usually initiated rapidly and many families feel their lives
are spinning out of control.
At some stage, and this will vary for each child being dependent on
cancer type and treatment; schooling continuation and progress
becomes an important consideration. Sometimes, issues with school
and a child’s education may not even become evident for some time
after a child returns to school. Often a parent or carer finds themselves
wondering about some noticeable difference in the way their child
learns new information. All of these complex aspects may raise
questions and identify needs. This book attempts to provide some
guidance towards providing the answers.
Over the course of a school year a child will spend approximately one
third of their waking hours at school. This does not include important
after school activities such as homework, reading, extra tuition, family
time, sport training and socialising with friends. Schooling and after
school activities form part of a child’s development. To suddenly have
these activities interrupted as a result of illness can have a huge impact
on the child physically, socially, emotionally and educationally.
What About School? is designed so that parents can access information
relevant to the age of their child and the stage of the cancer treatment
from diagnosis to years after treatment has finished. It is NOT intended
to provide a comprehensive explanation of all cancer types, treatment
details or health information; as the medical profession is best placed to
provide this information to parents.
Research recognises that the outcomes for a child with cancer are more
positive if schooling and contact with peers is maintained. What About
School? has been developed because of a recognised need for improved
services and support for children, adolescents and families in relation
to the continuing education of a child with cancer.
At diagnosis the primary concern for parents and carers is for their
child’s health. Along with the emotional impact of diagnosis, medical
The focus is on how the age of the child and cancer treatment may
affect the child’s educational progression or pathway. Parents can dip
in and out of the book according to where questions may be aimed.
Tabs are placed throughout the book to assist with this process. At
different stages some sections of the book will be more relevant for you
and your child. There may be times when all, some, or none of the
content may apply to your child’s situation.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
WHERE TO START?
Introduction
It is recommended you begin by looking at the Educational Pathways Diagram in
Chapter 1. Locate where your son or daughter may be within the treatment and
developmental pathways. This will give you an idea of support and possible
intervention options. From here you can move to more detailed information
throughout the book.
Where to Start
Chapter 2 provides an overview of cancer types, common treatments and the
possible effects on long term development and education.
Chapter 3 details developmental stages and educational issues related to:
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Early Childhood
Middle Childhood
Late Childhood/Early Adolescence
Adolescence
Young Adults
You may like to read in detail about your child’s current age or read ahead for
future planning.
Chapter 4 contains sections on a range of Practical Issues which are often helpful
to families. It includes information on: siblings, support groups, self care and
detail on child topics such as executive functioning and examination support.
WELCOME
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Supporting the educational progress of your child during and after treatment
often means that parents become advocates for their child. Advocating means to
support or urge by argument. Information for parents on what support is needed
for their child, what arguments they may need to provide in order to convince
others to provide support, who may need urging and who can provide support is
covered in the next chapter as well as throughout the book.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
WHERE TO START?
Introduction
Where to Start
Chapter 5 is a detailed section which may assist you as you work with
others to support your child. Summary information pages are provided
for different age groups as well as pages regarding:
Finally in Chapter 6 you will find Resources and References including
Websites that may be of further interest to you. Often these references
or resources will have been mentioned in earlier parts of the book.
• Infectious illnesses
• Siblings at school
• Fatigue
These pages may be copied for your own use or given to other people to
help them understand how a cancer diagnosis may affect your son or
daughter’s education.
A Glossary has been provided at the back of the book to help explain
new or unfamiliar words. Blank pages for your own note taking have
been placed at the end of the book to help you to keep track of your
ideas or areas for follow up.
KIND
D
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R
O
W
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…T
D
N
“A
OWN
OF TIPPED UPSIDE D
AS IT DOES FOR
EVERYONE.”
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Throughout the book you will also notice comments which have been
made by parents in similar situations. As part of the Educational
Pathways Project, we have asked parents what their child’s educational
experiences were like following a diagnosis and treatment for cancer.
The depth of information gained from these parents has been
invaluable in developing and contributing to What About School?. Any
names used in these comments have been changed to protect
individual privacy.
The process of gathering and providing the information in What About
School? is part of an ongoing project where the most suitable and
practical support options and interventions are still being learnt about
and developed. As such some aspects of this book are a ‘work in
progress’ and your feedback would be very welcome. Hopefully, the
parent comments and educational information provided in What About
School? can begin to provide you with some useful knowledge and
direction as you support your son or daughter through and beyond
their educational pathway.
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Key Needs
Age, Dev.
Milestones
Treatment &
School
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
EDUCATIONAL PATHWAYS
What is an Educational Pathway?
An Educational Pathway considers the educational course or path that a
child is likely to progress through, following a diagnosis of cancer.
The Pathway gives recommendations for support and information
needs for parents and students commencing from the time of diagnosis
through to post treatment.
There are often long term schooling and psycho-social issues that a
child may experience that need to be monitored and supported.
To use this chart, identify the treatment stage of your child and think
about the following support options:
• Do you have a central contact person at your child’s school?
• Are there parent information sessions available through the
hospital?
• Have you accessed a catch up program for missed school skills?
• Would your child benefit from involvement with support groups
e.g.: CanTeen, Camp Quality, Red Kite or the Ronald McDonald
Learning Program?
The next chart provides an overview of the developmental milestones
and possible support and/or intervention needs for each age group.
Once you have an understanding of what your child may be
experiencing or requires, you will find more detailed information for
each age group in Chapter 3.
TRENGTH
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W
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S
E
“H
DIERING
L
O
S
Y
IT
C
A
N
E
T
D
AN
ON AS HE DOES.”
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Key Needs
Age, Dev.
Milestones
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
KEY NEEDS FOR THE STUDENT
Diagnosis
to Post
Treatment
Diagnosis
• Health Priority – Multidisciplinary Oncology Team
• Educational information for parents & student
• Communication with key education contacts and friends
Treatment &
School
Treatment
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Ensure opportunities for ongoing learning
Connected learning – technology support
Ongoing contact with friends
Planning for return to school
Link with support groups and services e.g.: RedKite
Transition back to School
• Supported re-entry
• Adjustments to environment, timetable, workload, homework etc.
• Test/Examination support
Always consider Individual
response to treatment,
family dynamics, siblings,
religious/cultural
background, language or
learning barriers to
understanding.
Post Treatment
• Ongoing Student support - emotional & academic
• Access the Ronald McDonald Learning Program
• Advocacy & possible modifications throughout the school years &
beyond!
• Group involvement e.g.: Camp Quality, CanTeen etc.
• Linked with Long Term Follow Up Clinic
Relap
se
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
For Teachers
& Schools
Extras
Early Childhood to Young Adult
Key Needs
Age, Dev.
Milestones
Age
Treatment &
School
Early Childhood
2 - 6 Years
Middle Childhood
7 - 10 Years
2
Practical
Issues
AGE DEVELOPMENTAL MILESTONES AND
FOCUS AREAS FOR SUPPORT
Educational
Pathways
1
Ed Pathways
by Group
3
Focus Areas
for Support, Need or Intervention
Developmental
Milestones
• Rapid Growth
• Language development
• Attachment to a significant
parent or carer
• Movement and coordination
• Developing self help skills
• Gross and fine motor
development
• Illogical thinking (according to
adults!)
• Limited perspective taking
• Emergence of self
consciousness
• Self help skills
• Monitor speech and language development
• Monitor fine and gross motor skill
development
• Phonemic awareness skill support
(identifying sounds and letters)
• Early maths concepts (size, shape, order,
etc)
• Preschool Health Plans
• Preschool early intervention plans
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School health plans
Intervention and Support Plans
Number fact skill support - (times tables)
Reading and writing skill support
Monitor self esteem and peer relationships
Playing and learning with others - group
skills
• Monitor fine motor skills (handwriting)
• Monitor speech development (speaking
and understanding)
• Monitor attention issues
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
For Teachers
& Schools
Extras
Key Needs
Age, Dev.
Milestones
Age
Treatment &
School
Late Childhood /
Early Adolescence
11-14 Years
2
Practical
Issues
Educational
Pathways
1
Ed Pathways
by Group
3
Developmental
Milestones
• Independence
• Importance of peers
• Pre-Puberty
• Self awareness and self esteem
• Challenging boundaries and
rules
• Developing organisational
skills
• Increasing abstract thoughts
and questions
Focus Areas
• Communication of medical and
educational background to high school
staff
• Assistance with the transition to high
school
• School Health and/or intervention Support
plans
• Monitor self esteem and peer
relationships
• Learning to take notes, use a diary, plan
ahead etc
• Monitor academic skills development
• Monitor the ability to prioritise and
follow set tasks to completion (Executive
Functioning)
• Monitor emotional state
• Support group involvement e.g.: Camp
Quality or CanTeen etc
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
For Teachers
& Schools
Extras
Key Needs
Age, Dev.
Milestones
Age
Treatment &
School
2
Practical
Issues
Educational
Pathways
1
Ed Pathways
by Group
3
Developmental
Milestones
Focus Areas
Adolescence
15 - 18 Years
• Independence
• Peer Influences
• Puberty
• Self awareness and self
esteem
• Possible risk taking behaviour
• Seeking relationships
• Identity Issues
• School Health and/or Intervention
Support Plans
• Monitor emotional state
• Developing logical and clear written
and oral skills
• Monitoring the ability to plan, organise and
prioritise assessment tasks and personal
activities (Executive Functioning)
• Keeping up with content based subjects
(Maths & Science)
• Exam taking ability and skills
• Consideration for future work/study
options
• Prepare for transition to adult health care
• Support group involvement
e.g: CanTeen etc.
Young Adults
19 - 24 Years
• Independent living skills
• Work/study opportunities
• Money management
• Sexuality - fertility
considerations
• Questioning life and its
meaning
• Independence from family
• Taking responsibility for health needs
• University Educational Access Schemes &
Special Consideration
• Encourage self awareness of emotional
needs
• Transition to adult health care
• Support group involvement e.g.: CanTeen
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Intro/Start
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
TREATMENT AND SCHOOL
Educational
Pathways
An Overview
Key Needs
The treatment type, intensity and duration will relate to the specific cancer type
and individual responses of each child. Treatment protocols will be determined
by oncology specialists. Some children may receive one treatment type or a
combination of treatments. The possibility of learning difficulties emerging in
the years following treatment for cancer is a growing area of research and
understanding.
Age, Dev.
Milestones
Treatment &
School
Some issues related to a cancer diagnosis and treatment will be common to all
children. These include:
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Hospitalisation
Absences from school – weeks or months
Physical limitations related to pain and fatigue
Infection control
The personal and emotional challenge of managing diagnosis and treatment
Reduced contact with friends
The Treatment and School Chart provides a summary of specific treatment types
and how they may affect school and a child’s education. Strategies for managing
treatment issues and effects, whether it is the long absences from school, ongoing
fatigue or attention issues are central to the content of What About School?
Detailed information about these issues can be found in Chapter 2 and Chapter 3.
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3
4
5
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Intro/Start
Cancer
Information
Ed Pathways
by Group
Extras
Chart
Key Needs
Age, Dev.
Milestones
What About School?
Possible Treatment Issues
Treatment
Treatment &
School
Chemotherapy
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2
For Teachers
& Schools
Educational
Pathways
1
Practical
Issues
3
4
5
Long absences during intensive treatment
Lowered immune system
Ongoing clinic appointments interrupting school attendance for several years
Cognitive changes may include:
。。
Changes in the time it takes to process information and complete
tasks
。。
Difficulty with sustaining attention or maintaining concentration
。。
Memory difficulties e.g.: remembering new information such as times
tables, spelling rules or novel content
。。
Planning ability
Learning difficulties in literacy and numeracy – relating to absences and memory
Difficulty with fine motor skills e.g.: writing skills
Ongoing Fatigue
Executive functioning difficulties (See Chapter 4)
。。
planning,
。。
organising thoughts and materials
。。
solving abstract problems
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Intro/Start
Cancer
Information
For Teachers
& Schools
Extras
Chart
Key Needs
Age, Dev.
Milestones
Treatment
Treatment &
School
Radiation
Therapy
2
Practical
Issues
Educational
Pathways
1
Ed Pathways
by Group
3
4
5
What About School?
• Hearing loss
• Dependant on type and location of the treatment
• Long absences from school
• Health related conditions impacting on school attendance and self esteem e.g:
。。
Hearing loss
。。
Delayed growth
。。
Hormone imbalance
• Radiation to the brain may specifically lead to cognitive changes e.g.:
。。
Executive functioning
。。
Changes in the time it takes to process information and complete
tasks
。。
Difficulty sustaining attention or maintaining concentration
。。
Memory
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Intro/Start
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Educational
Pathways
Chart
Key Needs
Age, Dev.
Milestones
Treatment
Treatment &
School
Surgery
What About School?
• Young children who have high-dose, whole brain radiation are at a greater risk
for cognitive difficulties and require follow up throughout their school years
• Dependent on the nature and extent of the surgery
• Dependant on other treatments also received
• School absences
• Surgical pain
• Issues of self image
• Need for follow up surgeries requiring time away from school in the future
• Surgery to the brain associated with tumour removal is a very complex operation
and a broad range of learning difficulties or disabilities may be experienced
1
2
3
4
5
WHAT ABOUT SCHOOL?
Home
Educational
Pathways
Intro/Start
Cancer
Information
For Teachers
& Schools
Extras
Chart
Key Needs
Age, Dev.
Milestones
Treatment
Treatment &
School
Stem Cell &
Bone Marrow
Transplants
2
Practical
Issues
Educational
Pathways
1
Ed Pathways
by Group
3
4
5
What About School?
• Extensive absences from school
• Isolation from family and friendsfor long periods due to infection control
• Health related conditions impacting on school attendance and self esteem
e.g.:
• Altered growth and development Early or late puberty
• Ongoing fatigue
• Cataracts
• Ongoing medical appointments affecting school attendance post transplant
• Changes in cognitive functioning related to high doses of chemotherapy
and/or radiation therapy administered at the time of the transplant
• Cognitive changes may include:
• Difficulty with executive functioning,
。。
Memory
。。
Planning ability
。。
Changes in the time it takes to process information and
complete tasks
。。
Difficulty with sustaining attention or maintaining
concentration
• Higher risk for younger children to develop cognitive difficulties. Long term
schooling follow up will be required.
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Cancer
Treatments
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
A DIAGNOSIS OF CANCER
In Australia there are approximately 1170 children, adolescents and
young adults diagnosed with cancer each year. The most common
cancers in children are leukaemia, lymphoma and tumours in the
brain and spinal cord. Approximately 80% of children and adolescents
diagnosed with cancer will be survivors.
Below is an overview of each of the main cancer types and the most
common treatment approaches.
Treatment types and duration may vary for individuals depending on
the age at diagnosis, cancer diagnosis, stage and specific biological
differences of the tumour. The information within this section is
intended as a summary. It is recommended that you approach your
oncology specialist for clarification of your child’s cancer type or
treatment. The content has been brought together from a range of
references and sources all of which are named at the end of the chapter
and detailed in Chapter 6 Resources and References.
Diagnosis – A cancer diagnosis of a solid tumour or a blood malignancy
may have been suspected on the basis of clinical symptoms, physical
examination or clinical tests. The diagnosis will be confirmed by tests
or a biopsy which vary dependent on the cancer type.
Staging – Following a cancer diagnosis your child will have staging
investigations to document how far the cancer has spread. Depending
on the diagnosis, staging can take up to a week to complete as
multiple tests may be required. These tests give the doctors important
information about prognosis (survival) and treatment.
Toxicity Assessment – Before starting treatment your child may also
have tests to ensure that chemotherapy treatment does not affect
normal structures such as the heart, kidneys, hearing and fertility.
Treatment – Depending on the cancer diagnosis your child may be
given one or more types of treatments.
The four most common treatment options are:
• Chemotherapy
• Surgery
• Radiotherapy
• Bone Marrow Transplant
Further details about each type of treatment are included later in this
chapter.
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Leukemia
Lymphomas
Cancers of CNS
Cancers of the Kidney
Liver cancers
Sarcomas
Bone Cancers
Soft Tissue Sarcomas
Other Types of Cancers
Cancer
Treatments
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
COMMON CANCERS
Types & Treatment
Leukaemia
Leukaemia is a cancer of the bone marrow and tissues which produce the
circulating blood cells. Leukaemias are the most common childhood cancers.
Types of leukaemia include:
Acute Lymphoblastic Leukaemia (ALL): ALL is the most common childhood
cancer. It is most common in children between 2 and 5 years of age but can be
seen in younger patients and teenagers. It is a form of leukaemia or cancer that
affects the white blood cells called lymphoblasts. These abnormal cells take
over the normal bone marrow and can involve the body’s immune system before
spreading to other areas of the body. The overall cure rate is around 80%.
Treatment: 3-6 months intensive chemotherapy then 18 months maintenance
chemotherapy. Some types of ALL also require radiotherapy treatment. Patients
with high risk disease may require a bone marrow transplant.
Acute Myelogenous Leukaemia (AML): AML (also called acute myeloid
leukaemia, acute nonlymphatic leukaemia or ANLL) is a cancer of the myeloid
white blood cells which are produced in the bone marrow. The overall cure rate is
around 70%.
Treatment: Usually around 6 months of intensive chemotherapy. Patients with
high risk disease may require a bone marrow transplant.
References: Curesearch, Centre for Children’s Cancer and Blood Disorders, Sydney Children’s Hospital,
Educating the Child with Cancer, Cancer Council Australia & the Children’s Cancer Centre – RCH Melbourne
(For full Reference details see Chapter 6).
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Leukemia
Lymphomas
Cancers of CNS
Liver cancers
Sarcomas
Bone Cancers
Cancer
Treatments
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
COMMON CANCERS
Types & Treatment
Lymphomas
Lymphoma is a tumour of the lymph tissues (lymph nodes, lymph vessels, spleen,
bone marrow, thymus and tonsils), which are part of the immune system. The
lymphatic system runs through most of the body, which means you can get a
lymphoma almost anywhere in the body. Two main types of lymphoma include
Hodgkin’s lymphoma or Non-Hodgkin’s lymphoma.
Hodgkin Disease or Hodgkin’s Lymphoma(HL): This is a type of lymphoma,
which starts from white bloods cells called lymphocytes. There are a number of
different types of Hodgkin’s Lymphoma, which are more common in teenagers
although they can affect younger patients. The overall survival is greater than 90%.
Treatment: Patients will need chemotherapy and may need radiotherapy. Patients
who do not respond to treatment may need a bone marrow transplant.
Non- Hodgkin’s Lymphoma (NHL): This is a group of lymphomas again arising
from white blood cells called lymphocytes but down a microscope these lymphomas
look very different to Hodgkin’s Lymphoma. The doctor will give you the specific
name of your child’s NHL.
Treatment: Patients will need chemotherapy and may need radiotherapy. Patients
who do not respond to treatment may need a bone marrow transplant.
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Leukemia
Lymphomas
Cancers of CNS
Liver cancers
Sarcomas
Bone Cancers
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
COMMON CANCERS
Types & Treatment
Cancers of the Central Nervous System
Brain tumours: Brain tumours are the most common solid tumours in children
and teenagers and can be either benign (non cancerous) or malignant. There are a
number of different types of brain tumours that occur at different sites.
Treatment: This will be dependent on the type and location of the tumour as
well as the age of the child. Treatment may include surgery, chemotherapy,
radiotherapy as well as replacement of hormones in the pituitary.
Neuroblastoma: A cancer of the sympathetic nervous system. This tumour can
develop in the sympathetic nerve tissue in the neck, chest, abdomen and pelvis
but is most commonly seen in the adrenal gland. The symptoms which children
develop before diagnosis depend on the site at which the tumour is growing.
Treatment: Neuroblastoma is classified as low, intermediate or high risk
disease and the treatment varies according to the risk. Treatment may include
chemotherapy, surgery, radiotherapy and bone marrow transplant.
Cancer
Treatments
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Leukemia
Lymphomas
Cancers of CNS
Liver cancers
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
COMMON CANCERS
Types & Treatment
Wilms’ Tumour: also called nephroblastoma, is the most common solid
abdominal tumour seen in children. They arise from the kidney and usually only
one kidney is involved. Most children with a Wilms’ tumour are less than 4 years
of age. The overall cure rate is between 85-90%.
Treatment: Surgery to remove the kidney and tumour (called a radical
nephrectomy) may occur at diagnosis or after some initial chemotherapy. The
type of chemotherapy and duration of treatment will depend on the stage and
type of tumour. Some patients may need radiotherapy treatment.
Sarcomas
Bone Cancers
Cancer
Treatments
WHAT ABOUT SCHOOL?
Home
Diagnosis of
Cancer
Common
Cancers
Leukemia
Lymphomas
Cancers of CNS
Liver cancers
Sarcomas
Bone Cancers
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
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COMMON CANCERS
Types & Treatment
Liver Cancers
Liver cancers are abnormal growths (tumours) in the liver. The most common
form of liver cancer in children is called a Hepatoblastoma although some
children and adolescents may have an adult type of liver tumour called a
Hepatocellular carcinoma.
Hepatoblastoma: These tumours occur in infants and children and are commonly
diagnosed in patients less than three years of age.
Treatment: Chemotherapy may be used before and after surgical removal of the
tumour. A small number of patients may need to have a liver transplant.
Hepatocellular carcinoma: These tumours are very rare in children and are
usually caused by infections or illnesses that cause damage to the liver.
Treatment: Hepatocellular carcinoma tumours are usually treated with a
combination of chemotherapy and surgery.
Cancer
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Sarcomas
Sarcomas are cancerous tumours arising from connective tissue. These cells
originate from bone, cartilage and fat tissue and are given a number of different
names depending on where they start from.
Cancers of CNS
Liver cancers
Sarcomas
Bone Cancers
Cancer
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Types & Treatment
Bone Cancers
Osteosarcoma: This is the most common type of bone tumour. These tumours
are commonly located at the growing end of the long bones of the arms and legs,
although they can also be found in the pelvis, skull or jaw. These tumours are more
common in adolescents and young adults but they are also seen in younger children.
The cure rate for localised disease is around 75%.
Treatment: Chemotherapy prior to and following surgery. The majority of
patients are able to have limb salvage surgery (surgery to spare the limb).
Ewing’s Sarcoma: This is the second most common bone cancer. It occurs in the
middle of the bone. It is commonly found in the femur (thigh bone), pelvis (hip
bones), ribs or clavicles. These tumours are more common in adolescents and
young adults but they are also seen in younger children.
The cure rate for localised disease is around 70%.
Treatment: Chemotherapy prior to and following surgery and possibly
radiotherapy. The majority of patients are able to have limb salvage surgery
(surgery to spare the limb).
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COMMON CANCERS
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Rhabdomyosarcoma: This is the most common soft tissue sarcoma that develops
from skeletal muscles. Soft tissue sarcomas are common in children less than five
but can also be seen in teenagers. They are most often found in the head, neck,
kidneys, bladder, arms or legs.
Treatment: Patients will need chemotherapy prior to and following surgery and
may need radiotherapy treatment.
Liver cancers
Sarcomas
Bone Cancers
Cancer
Treatments
ED WITH
“WE’RE STILL BLESS
ERE’S NO
OUR HOSPITAL… TH
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QUESTION ABOUT IT
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Types & Treatment
Retinoblastoma: is a malignant tumour of the retina (a thin membrane in the back
of the eye). They are most commonly seen in children less than 3 years of age .
The overall cure rate is greater than 90%.
Treatment: Treatment options include enucleation (surgery to remove the eye),
chemotherapy and in some cases other measures such as:
• Photocoagulation: using laser light to destroy blood vessels that supply
nutrients to the tumour
• Thermotherapy: using heat to destroy cancer cells
• Cryotherapy: using extreme cold to destroy cancer cells
• Radioactive (iodine) plaque: placing a radioactive patch in the retina; the
patch is removed after the tumour has received a specific dose of radiation
Cancer
Treatments
Germ Cell Tumours: Germ cell tumours (GCT) are malignant or benign tumours
which originate from germ cells. The most common sites are the testes, the
ovaries, the area at the bottom of the spine (sacrococcygeal) and in the middle of
the brain, chest or abdomen.
Treatment: The treatment of GCT depends on the type of GCT. Treatment is
usually surgery alone or a combination of surgery and chemotherapy.
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CANCER TREATMENTS
& Education Issues
Treatment for cancer in children, adolescents and young adults most commonly
includes:
• chemotherapy
• radiation therapy
• surgery
• stem cell transplants
The treatment plan that your child receives will be determined by your oncology
specialists. Treatment type, intensity, duration and combination will be related to
the specific type of cancer and how the individual responds.
The possibility of learning difficulties emerging in the years following treatment
for cancer is a growing area of research and understanding. Oncologists,
educationalists, psychologists and other specialists are working together to better
understand how to minimise the long term effects of treatment with improved
outcomes for the child and family.
References: Children’s Cancer Centre – Royal Children’s Hospital Melbourne, Cancer in the School Community,
EDMed – RMHC, Curesearch, Educating the Child with Cancer, Cancer Council Australia (For full Reference
details see Chapter 6).
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What is it?
Chemotherapy is the term given to the treatment of cancer using strong
drugs called cytotoxics (meaning cell poisons). Chemotherapy is used
alone or combined with surgery and/or radiotherapy. Chemotherapy
drugs injure or kill body cells. Chemotherapy attacks cancer cells but
will also affect some normal cells and can cause side effects. These side
effects are usually temporary but some may be long term. Different
drugs have different side effects and children can react differently to
the same cytotoxic drug.
How is it given?
Depending on the treatment regime prescribed, the child will either be
admitted to the ward for several days every two to three weeks or will
receive treatment as a day patient in the Outpatient Oncology unit.
The duration of chemotherapy treatment and type of drugs that are
used depend on the type of cancer the child has and his or her response
to the drugs (see Chapter 2 - Cancer Type).
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Chemotherapy
Chemotherapy can be given in many ways. How chemotherapy is given
depends on the drug and the type of cancer. In children, it is usually
given by tablets or by injection into the blood, tissue or spinal fluid.
The drugs enter the bloodstream and work to kill cancer in parts of the
body to which the cancer has spread. In preparation for chemotherapy,
children will have a small surgical procedure to insert a long-term
narrow tube, which is threaded into a major blood vessel. This provides
easy access to the bloodstream for giving the chemotherapy and for
taking blood samples, and protects the child from regular injections.
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Chemotherapy treatment protocols are researched thoroughly and given
according to the cancer type and age of the child. A child may receive
daily, weekly, or monthly chemotherapy treatments. The doctor may
also recommend cycles of treatment, which allow the child’s body to rest
between periods of chemotherapy treatment.
Intensive or maintenance?
For some cancers and most commonly for Acute Lymphoblastic
Leukaemia, children may receive intensive chemotherapy for a period
of weeks or months before commencing what is commonly referred
to as maintenance chemotherapy which may continue for a period of
months to years. For example: ALL is often treated with 6-8 months
of intensive chemotherapy followed by 18 months of maintenance
chemotherapy.
Whilst a child is experiencing intensive chemotherapy treatment they
are unlikely to be well enough to attend school. This is the period when
short term side effects will be most intensively experienced.
By the time that a child either completes treatment or commences
maintenance chemotherapy they may be beginning to be spending less
time in hospital and more time at home. Chemotherapy may also be
given in conjunction with surgery or radiation treatment.
Short Term Treatment Effects
Many of the medications used in chemotherapy also carry the risk of
both short-term and long-term problems. Both short term and long
term treatment effects may vary from child to child and with the exact
chemotherapy drugs that are administered. Your oncology specialists
will explain these side effects to you and monitor them carefully.
References: Children’s Cancer Centre – Royal Children’s Hospital Melbourne, Cancer in the School
Community, EDMed – RMHC, Curesearch, Educating the Child with Cancer, Cancer Council
Australia (For full Reference details see Chapter 6).
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Chemotherapy
Sometimes an effect may be both a short term and long term side effect
such as fatigue.
This may include starting to consider returning to school if they have
been absent for a long time.
Short-term treatment effects may include:
Some chemotherapy drugs have effects that are not observed initially
but may become apparent in the months and years after chemotherapy.
These are called long term treatment effects. (There are also possible
medical and health related long term treatment effects of chemotherapy.
Any health related side effects are best discussed with your oncology
specialists and monitored through a Long Term Follow Up Clinic.)
•
•
•
•
•
•
•
nausea
vomiting
hair loss
fatigue
anaemia
abnormal bleeding
increased risk of infection due to destruction of the bone marrow
Chemotherapy and school
During intensive chemotherapy treatment children and adolescents
are unlikely to be well enough to attend school. Additionally a reduced
immune status may also affect the activities that can be participated in
safely. While in hospital or at home there may be some days or times
throughout the day when children are able to work on school activities
provided by the hospital school or home school. Encouraging your
child to maintain even a little contact with their school at this point is
important, particularly in order to maintain their links with their peers.
By the time a child completes treatment or commences maintenance
chemotherapy they may be spending less time in hospital and more
time at home. They may also be experiencing longer periods of feeling
well. During this time it is important to support your child’s education
and developmental progress with activities specific to their age (see
Chapter 3 for suggested age appropriate activities).
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In relation to education and learning, some chemotherapy drugs
may lead to long term treatment effects and changes in cognitive
functioning. Cognitive functioning refers to the brain and how it thinks
through tasks and activities. Areas which may be affected include:
• changes in the time it takes to process information and complete
tasks
• difficulty sustaining attention or maintaining concentration
• memory difficulties
• fatigue
• learning difficulties in literacy and numeracy
• difficulty with fine motor skills
• difficulty with planning, organising materials or solving abstract
problems which is referred to as executive functioning problems.
Suggestions for managing possible cognitive functioning changes are
detailed in Chapter 3. Practical strategies for schools and teachers are
also outlined on the School Information Pages (Chapter 5) and in the
Executive Functioning topic page (Chapter 4).
2
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Radiation Therapy
Radiation is the use of high-energy x-rays to kill or damage rapidly growing cells,
such as cancer cells. Radiation only damages cells in the area of the body where
the radiation is given. Unlike chemotherapy, radiation does not cause cell damage
throughout the body.
There are several different ways in which radiation may be given depending on
the cancer that is to be treated.
• Radiation may be given at the site of a specific tumour, in which case great
effort will be made to protect the healthy tissue around the tumour.
• In the case of a brain tumour such as a medulloblastoma, radiation to the
entire brain and spine is given.
• For some children who are preparing for a stem cell transplant total body
irradiation may be given.
Radiation therapy is usually given daily during the week for several weeks. There
is generally only one course of radiation therapy administered. Radiation therapy
may occur in conjunction with chemotherapy or other medical procedures.
Short term side effects may include fatigue, discomfort and susceptibility to other
illnesses. Children may be hospitalised during this treatment or may have to
travel to and from the hospital each day. Some children may experience increased
sleeping for 1-2 months following radiation to the brain.
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Radiation Therapy
Other side effects of radiation therapy depend on the dose received and
the area of the body that is treated. These may include:
• Mouth sores from radiation to the head or neck.
• Low blood counts from radiation to the hip bones.
• Hair loss.
• Radiation to the pelvis may cause problems with fertility.
Sometimes side effects of radiation are not seen for months or years.
For example, radiation to the head and spine may lead to decreased
growth, hormone production problems and/or learning disabilities.
Possible side effects should be discussed with your oncology team.
Surgery
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Long Term Treatment Effects
Whilst the short term treatment effects will most likely discontinue
following the end of treatment, long term treatment effects may not
become apparent for some months or years after treatment has finished.
Specific long term treatment effects will depend on factors such as the
type and location of the treatment and the age of the child.
Cognitive Late Effects
Radiation to the brain may specifically lead to cognitive late effects or
cognitive disabilities. This may result in children having difficulty with
executive functioning, memory or planning. Depending on the area of the
brain being treated, specific difficulties may emerge e.g.: language skills
or hearing loss. Research has shown that cognitive difficulties are often
more severe in those children who have high-dose, whole brain radiation
at a young age. Many radiation specialists and researchers worldwide
are focussed upon understanding these late effects and how they can be
minimised through new and improved procedures.
Suggestions for managing possible cognitive functioning changes are
detailed in Chapter 3. Practical strategies for schools and teachers are
also outlined on the School Information Pages (Chapter 5) and in the
Executive Functioning topic page (Chapter 4).
A child’s education and development may be affected by a health
related condition associated with the radiation, for example: hearing
loss from brain radiation or delayed growth and hormone imbalance.
This may lead to additional periods absent from school in the years
following treatment as well as issues related to self esteem.
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Surgery
Surgery may be involved at various stages with many different types
of cancer ranging from small routine procedures to more complex
surgeries. Children who are preparing for chemotherapy may have a
surgical procedure to insert a long narrow tube threaded into a major
vessel (port-a-cath). This provides easy access to the bloodstream for
giving the chemotherapy and for taking blood samples, whilst also
protecting the child from infections.
Other surgeries which may be conducted will specifically relate to the
cancer type. For example a biopsy involves taking a small sample of a
tumour to help determine diagnosis and treatment. Tumours may be
removed through surgery or debulked which means removing as much
of the tumour as possible.
“WE JUST LIVE EACH
EK
DAY AND EACH WE
AS IT COMES NOW.”
This surgery may be done at diagnosis or the child may have
chemotherapy to make the tumour smaller so that surgery is easier.
When some types of tumours are removed, further surgery related to
bone or organ removal and replacement may also be required.
Surgery Treatment Effects and Education
Short term side effects of surgery will be related to the nature and
extent of the surgery. Side effects of surgery will range from varying
levels of pain and length of hospital stay.
How surgery affects a child’s development and education will also depend
on the nature and extent of the surgery. For example, a child who has to
have an osteosarcoma (bone tumour) removed and then undergoes bone
replacement may experience many weeks of hospitalisation and possibly
later follow up surgeries. This may lead to many extended periods away
from school. This same child may also receive chemotherapy which may
add to other treatment side effects.
Surgery to the brain associated with tumour removal is a very complex
operation and a broad range of learning difficulties or disabilities may
be experienced. Support from the brain injury rehabilitation team
will assist you to understand the nature of any possible brain injuries
resulting from surgery.
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Stem Cell and Bone Marrow Transplant
Bone marrow is where blood cells are produced and it is located in the
core of long bones such as in the arms and legs and in the centre of flat
bones such as the hip bones.
Stem cells are the earliest and most immature cells that are produced.
Stem cells can divide to produce more stem cells or become red blood
cells, white blood cells or platelets. Each of these blood cell types has a
particular function. All of the medical detail regarding blood cells and
their importance will be explained to you by your oncology specialists.
Stem cell transplant, which includes bone marrow transplant (BMT)
is a procedure carried out to replace defective bone marrow stem cells
with healthy cells. Stem cells may not be functioning correctly due to
an underlying disease or the effects of chemotherapy and radiation
therapy. BMT’s not only provide a possible cure for diseases in which
the marrow is defective, but also allow higher doses of chemotherapy
and radiotherapy to be used, than would otherwise be possible.
There are three types of BMT, which are named according to the
relationship between the patient and the donor.
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CANCER TREATMENTS
A BMT is often given to patients with leukaemia and other cancers who
have not responded to conventional treatments.
1
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• Autologous BMT involves the collection of the patient’s own
stem cells, either by harvesting bone marrow or peripheral
blood stem cells. These cells are then frozen and stored before
being reinfused or given back to the patient after high doses of
chemotherapy.
• Syngeneic BMT is the transplant of stem cells from one identical
twin to the other. Such a transplant is effectively the same as
an autologous transplant because the donor’s bone marrow is
identical to the patient’s.
• Allogeneic BMT is the transplant of stem cells from a donor other
than an identical twin. The most common and most suitable donor
is usually a brother or sister of the patient. Patients who do not have
a suitable donor in the family, may find an unrelated donor on one
of the world wide Volunteer Bone Marrow Donor registries. Suitable
stem cells may also be accessed from large banks of stored, donated
cord blood. Cord blood is the blood which is left in the placenta
after the delivery of a baby and it contains large numbers of stem
cells. Cord blood is being used increasingly as a source of stem cells
for transplantation instead of bone marrow.
Side effects of bone marrow or stem cell transplants can be quite
severe. Some common complications include infections, mouth sores,
fatigue and low numbers of both white blood cells to fight infection and
platelets for blood clotting. The recovery period after transplant can
extend for many months.
The extended recovery period and the lowered immune system of a
child who has received a stem cell transplant usually requires them to
be hospitalised in an individual room – ‘in isolation’ for a period of up
to several months.
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Stem Cell and Bone Marrow Transplant
Both the nature of the medical procedure, recovery time and the isolation may
have a substantial impact on a child’s development and education. Every effort
should be made to ensure that the child or adolescent maintains contact with his
or her peers as well as involvement with some ongoing learning opportunities.
This can be achieved through the use of computer technology, letters, video links,
mobile phones, photo exchange or any other creative communication approach
that that will ensure contact with others is maintained.
Long Term Treatment Effects
Transplants may lead to health and/or cognitive changes. Health issues may
include early or late puberty, altered growth and development, cataracts and
ongoing fatigue. These ongoing issues may interfere with a child’s progress at
school in the years following the treatment due to the need for ongoing medical
appointments and management.
Stem Cell & Bone
Marrow
Changes in cognitive functioning may be related to the high doses of
chemotherapy and/or radiation therapy which may have been administered at the
time of the transplant. Some of the cognitive changes may not become apparent
until several years after treatment as the child begins to take on new learning.
Cognitive changes may include increased difficulty with executive functioning,
memory, planning ability, changes in the time it takes to process information
and complete tasks and difficulty with sustaining attention or maintaining
concentration.
1
2
Suggestions for managing possible cognitive functioning changes are detailed in
Chapter 3. Practical strategies for schools and teachers are also outlined on the
School Information Pages (Chapter 5) and in the Executive Functioning topic page
(Chapter 4).
References: Children’s Cancer Centre – Royal Children’s Hospital Melbourne, Cancer in the School Community,
EDMed – RMHC, Curesearch, Educating the Child with Cancer, Cancer Council Australia (For full Reference
details see Chapter 6).
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EDUCATIONAL PATHWAYS BY AGE GROUP
Early Childhood
Dev & Education
Cancer in Early
Childhood
Challenges
After Treatment
Supporting your child
Communicating with
profs.
Ongoing Concerns
Further info & Support
Middle
Childhood
Late Childhood
Adolescence
Young Adults
Early Childhood - 2 to 6 years old
Early childhood is a time of rapid growth and increasing independence for all children as they develop their ability to move, think, play,
imagine, communicate and interact with others. This chapter provides details about development, education and cancer in early childhood.
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Development and Education
Children face a broad range of developmental changes, challenges and
delights during early childhood. Some of the major milestones faced
during this age period include:
• Rapid growth – physically, mentally and emotionally
• The development of language - both oral and written
• Attachment to a significant person
• The development of movement and coordination skills
• The development of self help skills such as getting dressed
Young children are learning at a remarkable pace! At the age of three
there are more neural connections occurring within their brain than at
any other time of their life. Parents or significant carers are the main
teachers and role models for young children as they learn how to walk,
talk and face new situations.
Many children will also begin attending a Child Care Centre, Preschool
or Day Care during early childhood and experience many new learning
challenges in these environments.
From ages 2-6, children also enter a stage of seeking greater
independence wanting to do more things on their own. They may want
to choose their own clothes or brush their own teeth. At other times
they want parents to do it all for them!
Their emotional growth and learning to regulate their emotions is also
occurring daily and hourly. They develop these skills through their
interactions with other children and adults. Skills may include:
• taking turns
• sharing
• dealing with frustrations.
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Cancer in early childhood
Cancers occur more often in early childhood than in children aged between 5 and
15. The most common cancer types at this age include: leukaemias, cancers of the
brain and central nervous system as well as kidney and other soft tissue cancers.
This can be a very vulnerable age for a young child to receive a cancer diagnosis
due to the rapid growth and development in these early years of life. Thankfully,
treatments for cancer for this age group recognise the vulnerability of young
children and all possible attempts are made to try and avoid the most invasive
treatments.
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Challenges for young children with cancer
A young child with a cancer diagnosis faces a range of changes and challenges.
These include the treatment procedures, new surroundings, unfamiliar people and
specific health issues.
Two major challenges that may be experienced by young children during
hospitalisation include physical confinement and administering medications.
Physical confinement can be difficult for any child but in early childhood
especially, children need to be using and developing their fine and gross motor
skills. Gross motor skills refer to activities such as climbing, running and
jumping. Using a hospital playroom may assist with developing these skills.
Fine motor skills involve the use of our arms and fingers. Activities to develop
fine motor skills include drawing, painting, using play dough and using building
blocks. These activities can still be done at the bedside or at home during
treatment and often work well as a distraction.
Administering medications may be a difficult process as some young children
show negative reactions and/or resistance. Your oncology team will work with
you to assist your child. This may involve alterations to procedures, relaxation or
play diversion.
It can be important to remember that children in early childhood may be
surprisingly strong and positive as they do not have pre-existing ideas about
hospitals and what it means to have cancer.
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When treatment has finished
While research recognises the vulnerability of cancer treatment in early
childhood, there is also increasing knowledge which can help you to support your
child through any signs of possible late effects which may develop.
Challenges
After Treatment
Communicating with
profs.
Ongoing Concerns
Middle
Childhood
Late Childhood
Chapter 2 details specific cancer treatments and the possible effects that the
treatment may have on a child’s development and education. It is important
to read this section in relation to the specific type of treatment your child has
received. Treatment effects may take years to be fully known.
It is important that children who have been diagnosed with cancer in early
childhood are monitored throughout their schooling. This is particularly
important during the first few years of school when the foundations for reading,
writing, spelling and maths are developed.
It is recognised that children who have parents who value education and monitor
their child’s academic progress following cancer treatment, have more positive
educational outcomes.
Adolescence
Supporting your child through their entire school life may seem a huge task when
they may not have even started school yet.
Young Adults
Focus areas for support or intervention:
• Speech and language development
• Fine & gross motor skill development
• The ability to begin to identify letters and sounds
• The ability to begin to use maths concepts such as numbers, position, size,
shape etc.
• Vision
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Cancer in Early
Childhood
Make reading part of your
child’s day wherever you are!
Challenges
After Treatment
Communicating with
profs.
Ongoing Concerns
Middle
Childhood
Late Childhood
Adolescence
Young Adults
1
2
• Hearing
• Attention
• Memory
Attention – Treatment for childhood cancer may lead to changes in a child’s
ability to maintain their attention or focus on tasks. It is suggested that this
aspect is monitored closely as the child develops. Sometimes a child is prescribed
medication to assist with attention difficulties. In all cases it is suggested that
teachers are alerted to possible difficulties so that they can modify the learning
environment and positively support attention challenges.
Simple strategies can include:
• Asking the child to look at you before you ask them to complete a task.
• Minimising the number of requests you make of a child at the one time.
• Asking a child to repeat what you have asked them to do.
• Practising early learning skills such as counting, songs or rhymes many
times.
Positives too! - While there may be areas requiring additional support, parents
often see some amazing strengths in their young child. Children may become
quite capable at holding adult conversations due to the interactions with
hospital staff. They may also become quite the medical expert when it comes to
procedures, drips flows, port-a-caths etc. They will be able to explain this in great
child-friendly terms to their friends and others.
Many parents also report seeing a greater level of empathy in their own child as a
result of their experiences at a young age. Frequently a child with cancer will be
the first to run to another child who may fall over on the playground or stand up
for another child who is being teased.
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Young Adults
Supporting your child in early childhood
There are many ways in which you can support your child’s developing
mind and their emotional needs during the early childhood years. Your
presence in their lives or the presence of a significant adult is extremely
important to each child. Care, love and reassurance are at the heart of this
need.
If your child is away from home for treatment, it is important to ensure that
your child has time with other children whenever it is possible.
Contact with siblings or playmates assists with developing social skills.
If visits are not possible, perhaps you could video siblings at home or
parents of your child’s playmates may send in a video of themselves.
Webcam hook-ups, (where possible) can help maintain links between your
child in hospital and friends or family at home.
Familiar toys from home are special and provide reassurance for your
child. Young children are often seen carrying around a favourite teddy,
doll or toy.
Pretend play is an important part of early childhood so take time to
‘pretend’ you are cooking, caring for a baby doll, exploring a jungle or
sailing the seven seas! All you need is your imagination! Make up some
crazy songs or sing a favourite nursery rhyme.
Early concept skills such as shape, colour, size and number can be
reinforced in everyday tasks and are central to development in early
childhood. Count beds, people, toys, anything around you.
Talking about everyday things is also very important such as: Is it day or
night? How do we know? Hot or cold? Wet or dry?
Talking about feelings can help your child to understand themselves
and others. What makes me happy? Why am I angry? What can I do
if I’m angry? Does that person look happy or sad? In early childhood,
children begin to develop a sense of how others may feel and it is good to
encourage this.
Books, books, books! Reading to and with your child is one of the greatest
gifts that you can give them. Reading opens up a child’s world; it is a
great distraction and it can create a special closeness between the reader
and the child. A child who watches you read to them begins to learn how
words are placed on the page, how we read from left to right or how a
picture helps us imagine the words. These skills are all referred to as pre
reading skills and are very important for when a child starts learning to
read at school. Try to access as many books as you can.
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Communicating with Child Care Centres, Preschools,
Family Day Care etc
It is important to communicate with your child’s Preschool or Day
Care Centre about your child’s health and development. A visit, phone
call, email or letter can outline what aspects of your child’s illness
and treatment you would like the centre to know. In Chapter 5 you
will find a Preschool Information Page for your child’s teachers. The
page provides an overview of cancer in the preschool years and many
support strategies that teachers can implement.
WHEN
”SHE HAD CANCER
I’D
SHE WAS THREE, IF
TAUGHT
E
V
’
D
L
U
O
W
I
N
W
O
KN
HER MORE.”
If your child has commenced school, staff from your child’s school of
enrolment have a responsibility to assist you with the ongoing education
of your son or daughter under the Australian Disability Discrimination
Act 1992 and the recently reviewed Disability Standards for Education
2005. Examples of assistance may include: partial attendance, reduced
workload, a modified curriculum, online learning support etc.
It is vital to communicate to the staff the risks to your child if another
child in the centre has certain infectious illnesses such as chicken
pox. An Infectious Illness Letter to help you with this communication
process is also included in Chapter 5. The Outreach Nurse or Clinical
Nurse Consultant from your treating hospital may be able to visit the
preschool to discuss your child’s medical needs.
Your Preschool or Day Care staff may also be able to help you to
understand the developmental needs of your child. They could provide
you with some simple activities, games or books that you could share
with your child while they are in hospital.
Support for the siblings of your child with cancer is also very important.
Sibling issues are outlined in Chapter 4 and an easy to use letter to let
teachers know about a sibling’s situation is provided in Chapter 5.
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Ongoing concerns?
If you have concerns about your child’s development in these early
years you can discuss these with your medical team, Preschool or Day
Care staff and/or seek further assessments to better understand your
child’s individual needs.
Challenges
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Late Childhood
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1
2
Assessments can provide a more detailed understanding of your child’s
strengths and areas where they may need some extra help. They are
conducted by specialists and may be accessed from:
• Your oncology team
• Hospital services
• Community health services
• Private providers following a referral from your
own doctor
• The Ronald McDonald Learning Program
• Preschool support and early intervention programs
• Education Departments in each State or Territory
• School counsellors/guidance officers or psychologists
Assessments that may be conducted in early childhood include:
• Developmental Assessment – A developmental assessment
looks at aspects of your child’s development compared to other
children his/her age. It considers aspects of gross and fine motor
development, concept knowledge e.g.: colours, size, position,
ability to follow directions. This assessment may assist you with
understanding areas where your child needs further support. These
are usually conducted by a psychologist.
• Psychometric Assessment – A psychometric assessment looks
at the general intelligence of preschool and early primary
school aged children. Two common psychometric tests are the
Wechsler Preschool and Primary Scale of Intelligence – Third
Edition – Australian Standardised Edition – (WPPSI-III) and
the Woodcock Johnson Cognitive Abilities Battery - Australian
Edition (WJ-III). These tests incorporate subtests that can help in
evaluating the student’s strengths and weaknesses in areas such
as understanding language, concentration, general knowledge
and the ability to perceive and plan a task. These are usually
conducted by a psychologist.
• Neuropsychological Assessment – A neuropsychological
assessment examines the cognitive functioning of a child in
specific detail. This may include a psychometric assessment
(see above) as well as a range of tests to look at a how a child
learns, retains information, visually understands information
and how they think through problems and tasks (called executive
functioning – see Chapter 4). This assessment is conducted by a
neuropsychologist.
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2
“I MEAN THESE KIDS
S
H
T
G
N
E
R
T
S
T
O
G
E
V
HA
’T
THAT OTHERS DON
COME NEAR”
• Behavioural Assessment – A behavioural assessment looks at how your
child is developing in a social and emotional sense when compared to other
children of a similar age. It may consider aspects of daily living skills,
anxiety, aggression, adaptability, attention or social skills. Behavioural
assessments usually consider the views of the parent, teacher and
possibly the child via a self report form. These are usually conducted by a
psychologist.
• Speech Assessment - A speech assessment will look at all aspects of your
child’s communication. Communication is the process of being able to
understand and to be understood. Communication difficulties may be the
result of problems with speech, using and understanding language, voice,
fluency, hearing, or reading and writing. The assessment is conducted by
a speech pathologist. Speech pathologists also work with people who have
difficulties swallowing food and drink.
• Occupational Therapy Assessments - These assessments involve an
evaluation of developmental and performance skills and how these relate
to home, school and play environments. Occupational therapists who
work with children look at the relationship between the child, what they
physically need to do in any given day (e.g: self-care, play, school activities)
and how they can manage these tasks.
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Further information and support
At the back of this book are information pages to help you:
Other useful sections to read include:
• Explain the side effects of cancer treatment to others
• Support Letter for Preschool
• Outline strategies to help a young child who has experienced
cancer
• Support Letter for Primary School
• Social and Emotional changes
• Communicate the nature of infectious illnesses to others
• Sibling Information and Support pages
• Understand your child’s social skill development
• Looking after Yourself and your Family
• Resources and References
Extras
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Late Childhood
Adolescence
Young Adults
Middle Childhood - 7 to 10 years old
Middle childhood is a time when children become increasingly immersed in
learning and forming friendships with others. They are developing their views
of the world from the basis of their community and culture and display an
interest in who and what is going on around them.
Children at this age develop a greater sense of what is expected of them. Rules
and routines become important as they try to live up to these expectations. They
often become involved in sporting activities, which enables them to develop their
physical skills while spending time with friends.
Middle childhood is also a time when children can begin to start comparing their
features and functioning with others. As such a diagnosis of cancer at this age
brings specific challenges for the child and their parents.
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Development & Education
Middle childhood is a period of increased learning about the world and
others. Some of the major milestones faced by a child during this age
period include:
• Gross and fine motor development
• Changes in thinking patterns with a greater sense of rules and
routines
• The need for concrete examples and materials to help them
understand new concepts
• Limited perspective taking
• Emergence of self consciousness
• Increased self help skills
Children at this age are fully immersed in the school environment
and the majority of children will progress through their school years
gaining in ability and confidence. Other adults begin to add to the
significant teaching role of parents during this time, including school
teachers, sporting coaches, and parents of their friends.
In middle childhood, friendships and social activities become more
important. Playing at a friend’s house may become a frequent request.
Children in middle childhood often join community, social and sporting
activities such as soccer, dance, netball, gymnastics, rugby or drama
classes. This can make it a busy time for parents with after school
activities and the juggling of the activities of a number of children in a
family.
Some children may attend a before or after school service, while for
many there will also be increasing responsibilities for travel to and from
school on public transport.
Children become more responsible for their actions while also
monitoring the actions of others around them. With an increased
understanding of rules and fairness, the cry of ‘But that’s not fair!’
is often heard in middle childhood. They will often respond well to
structure and organisation both in the classroom and at home.
They are beginning to show signs of emotional maturity, learning to
increasingly control their emotions and emotional outbursts in line
with the situation. Hence school may not be the place where an angry
outburst occurs but rather it is saved for the safety of their home
environment. As they increasingly mix with other children their skills
of fair play and empathy for others develops. In the school environment,
there are often more group based activities to encourage and guide
positive social and interaction skills.
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2
Challenges for children with cancer in middle childhood
Compared to other periods of childhood and adolescence, the incidence
rate for cancers in middle childhood is substantially lower than in
other age ranges. The most common cancer types in middle childhood
are: leukaemias, cancers of the brain and central nervous system,
lymphomas and cancers in the bone or cartilage.
A child in this age group with a cancer diagnosis faces a range of
changes and challenges. These include the treatment procedures, new
surroundings, unfamiliar people and specific health issues.
As for the younger child, the aspect of physical confinement can be
particularly difficult for a child in middle childhood. Just as their world
was starting to expand with friendships and social activities they may
now find their contact with others limited.
Administering medications may be a difficult process for some children
who may show negative reactions and resistance. Your oncology team
will work with you to assist your child. This may involve alterations to
procedures, relaxation or diversion therapies.
Some children may take on the new learning associated with
medications, drip rates and medical interventions as they develop
a greater sense of their body. At this age they have a greater
understanding of what their body can and cannot do. The side effects
of some treatments such as weight gain or hair loss may be a big issue
at a time when children are beginning to compare themselves to others.
Support and understanding from parents and the school community
will be important at this time.
Children at this age may have many, many questions, some rational and
some that reflect their developmental age such as ‘Did I do something
to cause the cancer?’ Your support, honesty and reassurance will be
extremely important.
As your child will have commenced school it is very important to
maintain this schooling link. Research has shown that the maintenance
of peer support and regular school attendance helps prevent other
long term adjustment issues. Parents can help maintain some form
of peer contact by encouraging written, phone or internet based
communications with friends.
If you do not have a central school
contact person, ask for one!
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Under the Australian Disability Discrimination Act 1992 and the
recently reviewed Disability Standards for Education 2005, school staff
from your child’s school of enrolment have a responsibility to assist
you with the ongoing education of your son or daughter. Examples
of assistance may include: partial attendance, reduced workload, a
modified curriculum, online learning support etc.
It is very important to communicate with the school about your child’s
health and development. It is best if there is a central contact person at
the school for all communications.
Having a central contact person saves repeating information for both
parents and school staff. A visit, phone call, email or letter can outline
what aspects of your child’s illness and treatment that you would like
them to know. Parents report that the most successful strategy is to
meet in person with school staff. This may involve the principal, class
teacher, learning support teacher or school counsellor/guidance officer.
In Chapter 5 you will find a Primary School Information Page to give
to your child’s teachers. The page provides an overview of cancer in
the primary school years and many support strategies that schools and
teachers can implement.
It is vital to communicate the risks to your child if another child at school
has certain infectious illnesses such as chicken pox. An Infectious Illness
Letter to help you with this communication process is also included in
Chapter 5.
1
2
While your child is absent from school, ask school staff to provide
activities for your child. They could make up a box for the child that
includes:
• grade appropriate workbooks
• simple maths items such as a clock face or calculator
• puzzles
• library books
• art and craft items
Arrange to change the contents regularly.
Teachers may also be able to help you further understand the
developmental needs of your child.
It is well recognised that children who
have parents who value their education
and support the optimal development of
their child have more positive educational
outcomes.
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Returning to School
When your child is ready to return to school, additional support will be
very important. Parents and school staff need to work together to provide
this support. Specific issues about returning to school are addressed in
Chapter 4.
Chapter 2 details specific cancer treatments and the possible effects that
the treatment may have on a child’s development and education. It is
important to read this section in relation to the specific type of treatment
your child has received.
Treatment effects may take years to be fully known and it is important that
children who have been diagnosed with cancer in middle childhood are
monitored right through their schooling. This is particularly important if
a child experienced cancer treatment and absenteeism from school during
their first few years of school. These early years lay the foundation skills
for reading, writing and mathematics as well as many general learning
concepts.
You can assist your child for the return to school in some or all of the
following ways:
• Prepare them for answering questions from friends and teachers,
Why are you late? Why have you been off school? What’s wrong
with you? What sort of cancer is it? Can I catch it?
• Discuss with school staff the need for a health plan and/or
individual education plan.
• Arrange for the Outreach Nurse or Clinical Nurse Consultant from
your treating hospital to visit the school to discuss your child’s
medical needs with staff and peers.
• Ask for modified homework expectations.
Maintaining a School Year Record (see Chapter 5) will form a useful
overview summary of your child’s progress, absences and possible
needs over the years. This can be passed on to the next year’s teachers
to save you from explaining everything again.
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Supporting your child in middle childhood
Dev & Education
There are many ways in which you can support your child’s developing
mind and their emotional needs during the middle childhood years.
Your presence in their lives or the presence of a significant adult will
be extremely important to each child. Care, love and reassurance are at
the heart of this need.
Challenges
Returning to school
Siblings and friends visits will be important to ensure your child has
time with other children. Contact with other children assists with
developing social skills. If visits are not possible, perhaps you could
video siblings at home or parents of your child’s friends may send in a
video of themselves.
Ongoing Concerns
Late Childhood
Technology such as email or Skype can also be used with children in
middle childhood. Parental assistance and guidance will be important
here.
Adolescence
Interests and hobbies such as art, craft, sports magazines, toys or music
from home will provide reassurance for your child.
Young Adults
1
2
3
As it is an age when children begin to compare themselves with others,
there may be times when they are conscious of their appearance or their
inability to understand a school task. They will require support as they
manage these challenges.
Many parents report seeing a greater level of empathy in their child.
This may have developed as a result of the child’s early experiences.
They may be the first to run to another child who falls over on the
playground or stand up for another child who is being teased.
Assist and encourage your child to be involved in children’s cancer
support groups such as Camp Quality, Starlight, etc. This provides
the opportunity to have some fun while socialising with children with
similar experiences. There are also support groups suitable for children
available on the internet (See Chapter 6 Resources and References)
Encourage your child to write or draw. This will support their
developing fine motor skills. Other activities such as Lego, playdough,
craft or beading support this skill area.
Children begin to express themselves through writing in middle
childhood. Encourage your child to write a letter, a list, a recipe, or
a story. Spelling, grammar and punctuation skills are all reinforced
through writing.
Vocabulary development is very important at this age. Talk about what
is going on, who you have seen, things that you have read in books.
Talking about everyday things helps to develop vocabulary and general
knowledge e.g.:
• What season is it?
• Sports results?
• Months of the year?
• Places around the world?
Explain the meaning of words and
show them what they look like on paper.
Try to access a variety of
books and make reading
a part of your everyday
wherever you are.
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Ongoing learning and schooling in some
form is very important for your child.
Returning to school
Maths concept skills such as shape, time, size, order and number can be
reinforced in everyday tasks in middle childhood. Count beds, people, toys
anything around you. As your child learns to count and recognise numbers begin
helping them to learn their basic number facts such as 2+5=7, as well as their times
tables.
Talking about feelings can also help your child to understand themselves and
others. What makes me happy? Why am I angry? What can I do if I’m angry?
Does that person look happy or sad? Children are developing their skills of
understanding how others may feel and it is good to encourage this.
Books, books, books! Reading to and with your child is one of the greatest gifts
that you can give. Reading opens up a child’s world, is a great distraction and
creates a special closeness when a book is shared. Middle childhood is the time
when reading skills are developing. Just asking Who? What? When? Where?
Why? and How? about a favourite book helps to develop comprehension skills.
Ongoing Concerns
Late Childhood
Adolescence
Imagination, questions and pretend play is an important part of middle childhood
so take time to ‘pretend’ you are cooking, exploring a planet or sailing the seven
seas! All you need is your imagination! Make up some crazy songs, write an
adventure story, or make a cubby house.
Young Adults
Establish structured and supportive homework habits. Provide a special pencil
case with all that may be needed and have a designated homework space for the
child to work in when they can.
1
2
3
Your child may receive support from the hospital school/hospital education
services. Encourage their participation when they are well enough and provide
assistance if necessary with activities or worksheets.
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Ongoing Concerns
Attention and concentration: Sometimes treatment for childhood
cancer may lead to changes in a child’s ability to maintain their
attention or focus on tasks. It is suggested that this aspect is monitored
closely as the child develops. Paying attention and concentrating on
tasks are necessary for a child’s learning, particularly in the school
environment. Sometimes a child is prescribed medication to assist with
these attention difficulties. In all cases it is suggested that teachers
are alerted to possible difficulties so that they can modify the learning
environment and positively support attentional challenges.
If your child has missed a significant amount of schooling they may be
eligible for the Ronald McDonald Learning Program which provides
an educational catch up program in the form of individual tutoring by a
qualified teacher. (See Chapter 6 for contact details)
Positives too! - While there may be areas requiring additional support,
parents often see some amazing strengths in their child. Children
may become quite capable at holding adult conversations due to
the interactions with hospital staff. They may also become quite the
medical expert when it comes to procedures, drips flows, port-a-caths
etc. They may also enjoy the opportunity to explain this to their
classmates with teacher and parent support.
• Asking the child to look at you before you ask them to complete a
task.
Late Childhood
• Minimising the number of requests you make of a child at the one
time.
Adolescence
• Asking a child to repeat what you have asked them to do.
• Provide lots of repetition to reinforce concepts such as basic
number facts, spelling rules and times tables.
Young Adults
Concentration, like attention, can be an area affected by some cancer
treatments and you may notice changes in your child. In these school
years the development of appropriate concentration skills is central to
the learning process. You can reward your child for time spent on tasks
or gradually increase the time on a given task.
1
2
3
Special considerations can be put in place for NAPLAN assessment
e.g.: reading support, extra time including rest breaks, or use of a scribe.
This is arranged through your school principal or school counsellor/
guidance officer. (See Examination Support in Chapter 4)
MATHS
H
IT
W
P
L
E
H
D
E
D
E
E
“SO HE N
AT
K
O
F
O
D
IN
K
IS
E
H
MAINLY…
ISSED
M
D
’
E
H
;
S
H
T
A
M
T
U
ENGLISH, B
”
S
K
C
O
L
B
G
IN
D
IL
U
B
A LOT OF
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Ongoing concerns?
If you have concerns about your child’s development during the middle
childhood years you can discuss these with your medical team, hospital
school/hospital education services staff, home school staff and/or seek
further assessments to better understand your child’s individual needs.
strengths and areas where they may need help.
They are conducted by specialists and may be accessed from:
Late Childhood
Adolescence
Young Adults
• Private providers following a referral from your own doctor
Assessments that may be conducted in middle childhood include:
1
2
at the general intelligence of primary school aged children. Two
common psychometric tests are the Wechsler Intelligence Scale
for Children – Fourth Edition – Australian Standardised Edition
– (WISC-IV) and the Woodcock Johnson Cognitive Abilities
Battery - Australian Edition (WJ-III). These tests incorporate
subtests that can help in evaluating the student’s strengths
and weaknesses in areas such as understanding language,
concentration, general knowledge and the ability to perceive and
plan a task. These are usually conducted by a psychologist.
specific detail. This may include a psychometric assessment (see
above) as well as utilise a range of tests to look at a how a child
learns, retains information, visually understands information and
how they think through problems and tasks (called Executive
Functioning – see Chapter 4). This assessment is conducted by a
neuropsychologist.
• Academic Assessment – An academic assessment looks at the
student’s ability to complete activities such as reading, writing,
maths sums, spelling etc. Two commonly used academic tests are
The Woodcock Johnson Academic Abilities Battery - Australian
Edition (WJ-III) and the Wechsler Individual Achievement Tests
(WIAT-II). Other specific tests may be selected by the assessor
based on the child’s needs. These assessments are usually
conducted by an Educational Psychologist or school counsellor/
guidance officer. Some Learning Support Teachers can conduct
basic academic tests.
• Behavioural Assessment – A behavioural assessment looks at
how your child is developing in a social and emotional sense when
compared to other children of a similar age.
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It may consider aspects of daily living skills, anxiety, aggression,
adaptability, attention or social skills. Behavioural assessments usually
consider the views of the parent, teacher and possibly the child via a self
report form. These are usually conducted by a psychologist or counsellor.
difficulties swallowing food and drink. • Occupational Therapy Assessments - These assessments involve an
to home, school and play environments. Occupational therapists who work
with children look at the relationship between the child, their occupational
roles (this includes the tasks they need to perform in self-care, play and
at school) and an array of external or environmental factors. In middle
childhood fine motor skill development or difficulties may impact upon a
child’s ability to properly develop their writing skills and assistive tools or
technology may be required.
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• Outline strategies to help a child who has experienced cancer
Returning to school
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Late Childhood
Adolescence
• Communicate the nature of infectious illnesses to others
Other useful sections to read include:
• Primary School Information Pages
• Looking after yourself and your family
• Resource Support and Reference Links
• Examination Support – NAPLAN
• What is Executive Functioning?
Young Adults
• What is Fatigue?
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Late Childhood - 11 to 14 years old
The years of approximately 11 to 14 are most often referred to as the late
childhood or early adolescent years. Or an easy favourite is the tweens!
They are exactly that; between childhood and adolescence and it is a specific
developmental time filled with many changes and challenges.
Boys and girls in this age range follow a fairly predictable pattern of growth and
maturation; however the timing for each child will be quite individual. Peers
and self image become increasingly important and they begin to compare their
features and functioning with others. They are often actively involved in a range
of out of school activities such as dance, sport, drama, or music classes.
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Late childhood and early adolescence is a period of change as children
move from the world of childhood into adolescence.
Some of the major milestones faced by a child during this age period
include:
• An increasing sense of independence
• The importance of peers and their influences (both positive and
negative)
• Pre-puberty changes
• Increased sense of self awareness
• Challenging boundaries and rules
• Developing organisation skills
• Increasing abstract thoughts and questions
Adolescence
Young Adults
By now, most children will have developed good school habits in
relation to homework, acceptable behaviour and personal responsibility.
They are keen and interested learners, who are gradually moving from
a concrete view of concepts to increasingly abstract thought. A simple
example is they will be less likely to use counters or pictures to help
them to complete maths problems and instead begin to solve such
problems mentally.
As children approach adolescence the importance of peers strengthens.
Sporting and social activities may be just as important as school
learning time. This age group often have areas of specific interest
which they share with friends, team mates or family members.
They continue to respond well to structure and organisation in both
the classroom and the home environment. However, there is more
responsibility placed on them to organise tasks and projects for school,
look after their room or attend after school sport training.
Changes associated with puberty will lead to times of emotional ups
and downs and a questioning of parental expectations. Boundaries
both at home and school may be challenged.
Older children and young adolescents start to compare themselves,
their looks, their skills and performance with other children. They
may compare themselves against others through tests, sporting
achievement, grades and even clothing. At the same time they are
becoming aware that they have their own strengths and that these will
be different to others e.g.: being good at reading but not so good at art.
They require opportunities to mix with others and accept varying skills,
abilities and emotional temperaments. In the school environment,
group activities are often used as a learning experience to help develop
these interaction skills.
They are also beginning to show signs of emotional maturity.
Emotional outbursts can usually be controlled according to the
situation e.g.: minimal crying at school – saved up for home! As they
increasingly mix with other children their sense of how to interact with
others in a fair and empathic manner is developing.
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Challenges for children with cancer in late childhood/early
adolescence
The incidence of cancer in late childhood/early adolescence is more
than in the middle childhood period but still less than the levels of
incidence in early childhood or in late adolescence. Between the ages
of 10-14, the most common cancer types are: leukaemias, lymphomas,
cancers in the bone or cartilage and cancers of the brain and central
nervous system.
A child in this age group with a cancer diagnosis faces a range of
changes and challenges. These include the treatment procedures, new
surroundings, unfamiliar people and specific health issues.
Some children may take on the new learning associated with
medications, drip rates and medical interventions as they develop a
greater sense of their body. The side effects of some treatments such
as weight gain or hair loss may be a big issue at a time when children
are increasingly self conscious about their appearance. Support and
understanding from parents, friends and the school community will be
important at this time.
As with all children, the aspect of physical confinement can be
particularly difficult. Just as their world was starting to expand with
friendships and social activities they may now find their contact with
others limited.
They are likely to have many questions and sometimes there will not
be easy or straightforward answers. Being open and honest is very
important. Take the time to listen to your child and discuss issues
appropriate to their age.
Adolescence
Young Adults
Administering medications may be a difficult process for some children
who show negative reactions and resistance. Your oncology team will
work with you to assist your child. This may involve alterations to
procedures, relaxation or diversion therapies.
As your child will be halfway through their
school years it is very important to maintain
the school link and established friendships.
Research has shown that the maintenance of peer support and regular
school attendance help prevent other long term adjustment issues.
Parents can help maintain some form of peer contact by encouraging
written, phone or internet based communications with friends. It is well
recognised that children who have parents who value their education
and support the optimal development of their child have more positive
educational outcomes.
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recently reviewed Disability Standards for Education 2005 school staff
Adolescence
Young Adults
While your child is absent from school, ask school staff to provide
activities for your child. They could make up a box for the child that
includes:
It is important to communicate with the school and any out of school
care service regarding your child’s health and development. It is best if
there is a central contact person at the school who you can speak to.
• grade appropriate workbooks
Having a central contact person saves repeating information for both
parents and school staff. A visit, phone call, email or letter can outline
what aspects of your child’s illness and treatment that you would like
them to know. Parents report that the most successful strategy is to meet
in person with school staff. This may involve the principal, class teacher,
learning support teacher or school counsellor/guidance officer.
• subject books
Ongoing Concerns
It is vital to communicate the risks to your child if another child
at school has certain infectious illnesses such as chicken pox. An
Infectious Illness Letter to help you with this communication process
is also included in Chapter 5.
In Chapter 5 you will find Primary School and High School
Information Pages which you can photocopy and give to your child’s
teachers. These pages provide an overview of cancer during these
school years and offer many support strategies that schools and
teachers can implement.
In primary school there tends to be one or two central teachers for your
child. Communicating with high school staff may feel more difficult as
there are more teachers involved. It is often best to communicate with
a Year Advisor and ask them to pass on information.
• simple maths items such as a calculator or protractor
• class novels
• art and craft items
Arrange to change the contents regularly.
Ask teachers to consider ways to keep your child connected to the
classroom via the use of technology e.g.:
• Speaker phone
• Skype
• Smartboards
• Email
Teachers may also be able to help you further understand the
developmental needs of your child.
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Returning to school
When your child is ready to return to school additional support is very
important. Specific issues about returning to school are addressed
in Chapter 4. Parents and school staff need to work together
cooperatively for the child.
The transition from primary school to high school can be a particularly
vulnerable time for a child with cancer. Additional communication with
both schools will be very important to assist your child through the
extra changes in school routines, peer groups, classes, travel etc.
Chapter 2 details specific cancer treatments and the possible effects on
a child’s development and education. You may like to view this section
in relation to the specific types of treatment that your child has received
and possible short and long term treatment effects that may develop.
Adolescence
Young Adults
Treatment effects may take years to be fully known and it is important
that children diagnosed with cancer at this age are monitored right
through high school and into tertiary studies.
You can assist your child for the return to school in some or all of the
following ways:
• Prepare them for answering questions from friends and teachers:
Why are you late? Why have you been off school? What’s wrong
with you? What sort of cancer is it? Can I catch it?
• Discuss with school staff the need for a health plan and or
individual education plan.
• Arrange for the Outreach Nurse or Clinical Nurse Consultant
from your treating hospital to visit the school to discuss your
child’s medical needs with staff and peers.
• Ask for modified homework expectations.
• Help your child to be organised with their bag, books, notes,
projects and homework.
Maintaining a School Year Record (see Chapter 5) will form a useful
overview summary of your child’s progress, absences and possible
needs over the years. This can be passed on to the next year’s teachers
to save you from explaining everything again.
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Supporting your child in late childhood and early adolescence
Late Childhood
There are many ways in which you can support your child’s maturing,
developing mind and their emotional needs during the late childhood
and early adolescent years. Your presence in their lives or the presence
of a significant adult will be extremely important to each child. Care,
love and reassurance are at the heart of this need.
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Siblings and friends visits will be important. Contact with other
children assists with developing social skills. Peer acceptance and
interactions are becoming increasingly influential in this age group. If
visits are not possible, you could video siblings at home or your child’s
friends may send in a video of themselves. Children at this age will
have been exposed to a variety of technology and may be able to utilise
the internet, email, Facebook, mobile phones etc. Parental guidance
will remain important here.
Returning to school
Ongoing Concerns
Interests and hobbies: Items can be brought from home and activities
of interest such as art, craft, sports magazines, games or music
will provide reassurance for your child. Allow your child to remain
interested and involved as far as possible with the latest trends,
fashions or games.
Adolescence
Young Adults
1
2
3
As this is an age when they begin to compare themselves with others,
there may be times when they are increasingly conscious of their
appearance or their abilities. They will require support from parents,
peers and school staff as they manage these challenges. At the same
time many parents also report seeing a greater level of empathy in their
own child as a result of their experiences.
Provide your child with independence and decision making whenever
you can. Learning to make decisions is an important skill that is
developing during this time.
Cancer support groups such as Camp Quality or CanTeen etc, provide
an opportunity for your child to have fun while socialising with other
children who have been treated for cancer. There are also support
groups suitable for children available on the internet (See Resources and
References).
Encourage your child to write or draw. This will support their
developing fine motor skills. Other activities such as model making,
origami, craft or beading will support this skill area.
Encourage your child to keep a journal, write a letter, a list, a recipe, or
a story. Aside from developing spelling and punctuation skills, writing
is a great form of personal expression to be encouraged throughout the
school years.
Your child is at an age where they are becoming increasingly aware of
the world around them and their place within it. Children are moving
into more abstract thoughts. They may have many questions which
will become more complex as their thinking develops. Talking about
everyday issues and current affairs keeps them connected to their world.
Questions such as:
• What’s in the news?
• Who have you seen?
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• What was that book about?
Late Childhood
• Have you heard about…?
Ongoing support and practice in maths is essential. Due to the number
of new maths concepts being taught at school at this age, your child may
get left behind if there are long absences. They may require extra help
to learn their times tables or additional activity books to help them to
practice new concepts. Your child’s school teacher can provide you with
age appropriate workbooks or activities. There are many maths activity
books and computer games available to reinforce maths skills. These can
be found on websites or in bookstores. Extra assistance may be needed
to help your child catch up in areas that they have missed.
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a catch up program in the form of individual tutoring by a qualified
teacher (see Chapter 6 for contact details).
Adolescence
Allow for special considerations to be put in place for NAPLAN
assessment or other major exams e.g.: reading support, extra time
including rest breaks or use of a scribe. This is arranged through the
School Principal or school counsellor/guidance officer.
Young Adults
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2
3
Establish structured and supportive homework habits and encourage
your child to set realistic goals and time frames for tasks. Provide a
special pencil case with everything required and have a designated
homework space for your child to work in when they are up to it.
Books, books, books! Reading to and with your child is one of the
greatest gifts that you can give them. Encourage your child to read and
try to access appropriate books from the school, library or a bookshop.
Try to access as many books as you can and make reading part of your
everyday wherever you are.
Your child may receive support from the Hospital school/hospital
education services. Encourage their participation when they are
well enough and provide assistance if necessary with activities or
worksheets.
Attention and concentration: Sometimes treatment for cancer may
lead to changes in a child’s ability to maintain their attention or focus
on tasks. It is recommended that this aspect is monitored closely as
the child develops. Paying attention and concentrating is necessary
for a child’s learning. Sometimes a child is prescribed medication to
assist with these attention difficulties. In all cases it is suggested that
teachers are alerted to possible difficulties so that they can modify the
learning environment and positively support any attention changes or
challenges.
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• Asking the child to look at you before you ask them to complete a
task
Dev & Education
• Minimising the number of requests you make of a child at the one
time
Challenges
• Asking a child to repeat what you have asked them to do
• Provide lots of repetition to reinforce concepts such as basic
number facts, spelling rules and times tables
Communicating with
School
• Discuss memory strategies
Returning to school
• Prepare or prime the student for when memory of information will
be the focus of the task
Adolescence
Positives Too! While there may be some areas requiring additional
support for a child who has experienced cancer in late childhood or early
adolescence, parents are likely to see some amazing strengths in their
child. Your child may mature earlier through their experience and their
interactions with others may be at a more understanding and accepting
level.
Young Adults
2
Talking about feelings can help your child to understand themselves
and others. What makes me happy? Why am I frustrated? What
can I do if I’m frustrated? Why did that person react that way? This
encourages natural self development and emotional skills.
If your child is about to commence or has just commenced high school
this is a transition time which may require extra support from parents
and teachers. Ask for help from primary school teachers to help you
communicate your child’s strengths and needs to the appropriate high
school staff.
Ongoing Concerns
1
Concentration, like attention, can be an area affected by some cancer
treatments and you may notice changes in your child. In the late
primary and early high school years the development of appropriate
concentration skills is central to the learning process. You can reward
your child for time spent on tasks and gradually increase the time on
task.
3
Ongoing learning and schooling in
some form is very important for your
child.
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Ongoing concerns?
If you have concerns about development during the late childhood or
early adolescent years you can discuss these with your medical team,
hospital school/hospital education services staff or your child’s home
school. You may want to seek more information to better understand
your child’s individual needs.
strengths and areas where they may need some more help. They are
• Private providers following a referral from your own doctor
Assessments that may be conducted at this age include:
• Psychometric Assessment – A psychometric assessment looks at
the general intelligence of children. Two common psychometric
tests are the Wechsler Intelligence Scale for Children – Fourth
Edition – Australian Standardised Edition – (WISC-IV) and the
Woodcock Johnson Cognitive Abilities Battery - Australian
Edition (WJ-III).
These tests incorporate subtests that can help in evaluating
the student’s strengths and weaknesses in areas such as
understanding language, concentration, general knowledge
and the ability to perceive and plan a task. These are usually
conducted by a psychologist.
above) as well as utilise a range of tests to look at a how a child
learns, retains information, visually understands information and
how they think through problems and tasks (called Executive
Functioning – see Chapter 4). This assessment is conducted by a
neuropsychologist.
Edition (WJ-III) and the Wechsler Individual Achievement Test
based on the child’s needs. These assessments are usually
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• Behavioural Assessment – A behavioural assessment looks at how your
child is developing in a social and emotional sense when compared to other
children of a similar age. It may consider aspects of daily living skills,
anxiety, aggression, adaptability, attention or social skills. Behavioural
assessments usually consider the views of the parent, teacher and
possibly the child via a self report form. These are usually conducted by a
psychologist or counsellor.
roles (this includes the tasks they need to perform in self-care, play and at
school) and an array of external or environmental factors. In late childhood/
early adolescence the writing requirements may cause some concern for
your child. The use of assistive technology in the form of modified laptops
or IPads may benefit your child.
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At the back of this book are information pages to help you to:
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• Outline strategies to help a child who has experienced cancer
• Communicate the nature of infectious illnesses to others and how it may
affect your child if they are receiving treatment.
Challenges
Communicating with
School
Other useful sections or chapters to read include:
Returning to school
• Primary School Information Page
• High School Information Page
Ongoing Concerns
Adolescence
Young Adults
If you do not have a
central school contact
person, ask for one!
• Examination Support – NAPLAN
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Adolescence - 15 to 18 years old
Adolescence is the period when a student is completing their last few years of high school. It generally covers the ages of 15 to 18. Young
people in this age range follow a fairly predictable pattern of growth and maturation however the timing for each adolescent will be quite
individual.
Aside from their school commitments they often have well established routines, hobbies or interests. Time with friends and away from the family
home is increasing and peer interactions are very important.
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Adolescence is a period of change as the child moves from their
childhood world into the adult world. Some of the major milestones
faced by an adolescent during this age period include:
• Independence
• Peer influences
• Puberty
• Self awareness and self esteem
• Identity issues
Adolescents are usually well engaged in school life by this time. Some
will have clear ideas of their study goals and possibly careers plans,
while others just want to finish school! The balance between school
responsibilities and time with friends may lead to conflict with parents.
Many adolescents have areas of specific interest which they pursue
with friends or team mates.
In adolescence, cognitive and psychosocial development becomes
increasingly intertwined as they develop their sense of themselves. If
they are feeling anxious or worried then their academic performance is
likely to be affected. Similarly, if they are having difficulties with school
subjects this may affect their self esteem.
The importance of individual choices in relation to their studies
recognises their independence as learners in their own right. During
this time, adolescents also develop the ability to reflect on their own
learning processes: how they are proceeding with a task and how they
think about their thinking!
Adolescence is a time of rapid physical growth and hormonal changes.
This may lead to emotional highs and lows along with questioning adult
expectations.
Their emotional maturity is developing as is their sense of place and
purpose in the world. Relationships with one special partner may take
on increasing significance for some adolescents and this may involve
sexual activity.
New responsibilities emerge as older adolescents gain an after school
job or seek a driver’s licence.
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Challenges for adolescents with cancer
offered if needed or if obvious stress becomes more unmanageable.
The incidence of cancer in adolescence increases from that identified
in the middle childhood or early adolescent years. It is as high as
the incidence of cancer in the early childhood age group. The most
common cancer types during the years of 15-18 are: lymphomas,
melanoma of the skin, leukaemias and cancer of the testis.
If your child is still studying, research has shown that peer support and
regular school attendance help prevent other long term adjustment
issues.
A cancer diagnosis can provide a significant challenge for an
adolescent as well as the adults and carers around them. Just as they
are trying to develop their independence, this is taken away from them
through hospitalisation. They have to depend on their parents and
other adults in the medical profession and decrease the amount of time
they spend with peers. In some cases this may lead to conflict between
parents and the adolescent.
Medical issues and treatments have to be managed in a body where
hormonal balance, appearance and growth is all occurring and
interacting. This may lead to individual reactions to certain treatments
and drugs.
Issues of fertility and sexuality may be very real for some adolescents
as they contemplate their future and have to make certain informed
medical decisions around treatment options. Medical professionals can
assist with questions and concerns relating to this issue.
It can be very difficult to separate the medical and psychosocial issues
at this point and all adolescents should be provided with support and
understanding. Formal counselling or psychological support should be
Anxiety, depression and post traumatic stress disorder may be
experienced by adolescents. Once again, seeking professional
assistance is important if this occurs.
Research indicates that most adolescents who manage cancer get on
with living; some engage in risk taking behaviours and some find it
hard to adjust. Just as some post traumatic stress may occur, post
traumatic growth may also occur. An adolescent may experience
periods of both of these reactions. The post traumatic growth or
personal growth and maturity that may occur can involve a greater
understanding of self, relationships, personal strengths and an
appreciation of life.
It is often best to communicate with
a Year Advisor and ask them to pass
on information.
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Communicating with the School
In agreement with your son or daughter it is very important to
communicate with the school about their health and development.
recently reviewed Disability Standards for Education 2005 school staff
It is best if there is a central contact person at the school who you can
speak to. This saves repeating information for both parents and school
staff. A visit, phone call, email or letter can outline what aspects of your
child’s illness that you have agreed to pass on. Parents report that the
most successful strategy is to meet in person with school staff. This
may involve the principal, class teacher, learning support teacher or
school counsellor/guidance officer.
In Chapter 5 you will find High School Information Pages to
photocopy and give to key teachers. These pages provide an overview
of cancer during the high school years and offer many support
strategies that schools and teachers can implement.
Although many parents have spoken of difficulties with communicating
about their child’s needs to so many teachers in high school, it is very
important to establish and maintain open communication. School
staff may also be able to help you with further understanding the
developmental needs of your son or daughter.
It is important to communicate the risks to your child if another child at
school has certain infectious illnesses diseases such as chicken pox. An
Infectious Illness Letter to help you with this communication process
is included in Chapter 5.
Support for the siblings of your adolescent with cancer is also very
important. Sibling issues are outlined in Chapter 4 and an easy to use
letter that you could use to let teachers know about a sibling’s situation
is provided in Chapter 5.
If you do not have a central school
contact person, ask for one!
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Late Childhood
When your child is ready to return to school, additional support is very important.
Specific issues about returning to school are addressed in Chapter 4. Parents and
school staff need to work together cooperatively for the adolescent.
Adolescence
Chapter 2 details specific cancer treatments and the possible effects on a child’s
development and education. You may like to view this section in relation to the specific
type of treatment your child has received and possible short and long term treatment
effects that may develop.
Dev & Education
Challenges
Treatment effects may take years to be fully known and it is important that children who
have been diagnosed with cancer at this age are monitored carefully as they finish their
schooling and move into careers or further study.
Communicating with
School
Returning to school
Ongoing Concerns
Young Adults
Application to the University
Educational Access Schemes
& Special Considerations
Programs can assist with the
entrance requirements for
Universities across Australia.
You can assist your child for the return to school in some or all of the following ways:
• Prepare them for answering questions from friends and teachers, Why are you
late? Why have you been off school? What’s wrong with you? What sort of
cancer?
• Discuss with school staff the need for a health plan and or individual education
plan.
• Arrange for the Outreach Nurse or Clinical Nurse Consultant from your treating
hospital to visit the school to discuss your child’s medical needs with staff and
peers.
• Ask for modified homework and examination expectations.
• Help your child to be organised with their bag, books, notes, projects and
homework.
A shift of focus from conventional subject choices may be required. Increasingly TAFE
certificates and courses are available to students in high school. Life skill courses may
also be beneficial for some students who have special education requirements.
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Supporting your adolescent son or daughter
Late Childhood
There are many ways in which you can support your child’s maturing, growing
mind and their emotional needs during the adolescent years. Your presence in
their lives or the presence of a significant adult will be extremely important. Care,
love and reassurance are at the heart of this need.
Adolescence
Dev & Education
Peer acceptance and interactions are often quite influential in this age group.
If personal visits are not possible encourage contact via technology. Most
adolescents are regular users of technology to communicate with friends and
peers.
Challenges
Communicating with
School
Returning to school
Interests and hobbies: Items can be brought from home and activities of interest
such as art, craft, sports magazines, games or music from home will provide
reassurance. Allow your child to remain interested and involved as far as possible
with latest trends, fashions or games.
Ongoing Concerns
As this is an age of comparing themselves with others, there may be times when
they are conscious of their appearance or their inability to understand a school
task. They will require support from parents, peers and school staff as they
manage these challenges. At the same time many parents also report seeing a
greater level of empathy in their own child as a result of their experiences.
Young Adults
Provide your child with as much independence and decision making whenever
you can. They should remain an active part of treatment and communication
decisions.
1
2
3
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Assist and encourage your child to be involved in cancer support
groups such as CanTeen etc. This provides them with the opportunity
to meet other young people with similar experiences. There are also
many suitable support groups available on the internet (See Resources
and References).
Late Childhood
Adolescence
Being able to express themselves through writing is a very important
skill to be maintained at this age. Encourage your child to perhaps
keep a journal, write a letter, a list, or a story.
Dev & Education
Challenges
Communicating with
School
Your child is at an age where they are becoming increasingly aware
of the world around them and their place within it. They may have
many questions which become more complex as their thinking
develops. Some young people will be able to express their thoughts,
questions and concerns readily. Others may withdraw into their own
thoughts and not want to share that part of themselves with others. It
is important to seek professional support if you have ongoing concerns
about your son or daughter.
Returning to school
Ongoing Concerns
Support and practice in their chosen school subjects is very important.
Teachers can provide you with workbooks, activities or interactive
lessons online. Extra assistance may be needed to help your child catch
up in areas that they have missed.
Young Adults
Your son or daughter may require particular assistance with study
skills and exam skills particularly if they have missed a lot of time from
school. You may be able to discuss things like taking notes, using a
1
2
3
diary, planning for assessments etc. Your school support staff may be
able to provide some guided assistance if you believe that further help
is needed.
a catch up program in the form of individual tutoring by a qualified
teacher. (See Chapter 6 for contact details).
Allow for special considerations to be put in place for the senior
exams, e.g.: reading support, extra time including rest breaks in
order to manage fatigue and concentration issues or use of a scribe.
Specific forms and assessments are often required for this assistance.
Misadventure forms can be submitted for formal senior exams if
a student is suddenly unable to sit for an exam that they had been
preparing for. They are available from the school counsellor/guidance
officer or learning support teacher and need to be sought as soon as
possible. (See Chapter 4 Examination Support).
Establish structured and supportive homework habits. Display an
interest in any school assessment tasks and due dates.
Your child may receive support from the hospital school/hospital
education services. Encourage their participation when they are
well enough and provide assistance if necessary with activities or
worksheets.
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Concentration and attention: Sometimes treatment for cancer may lead to
changes in a child’s ability to maintain their attention or focus on tasks. It is
suggested that this aspect is monitored closely.
Late Childhood
Adolescence
Concentration, like attention, can be an area affected by some cancer treatments
and you may notice changes in your child. The ability to concentrate for longer
periods in the senior school years is central to the learning process.
Dev & Education
Positives Too! While there may be some areas requiring additional support
parents are likely to see some amazing strengths in their child. They may mature
earlier through their experience and as they interact with new people. They may
also develop a change in their sense of purpose in life. It has been shown that
many adolescents who experience cancer go on to work in the helping professions
themselves as a result of their experiences.
Challenges
Communicating with
School
Returning to school
Read, Read, Read! Encourage your child to read and try to access appropriate
books or reading materials. This may be the daily newspaper, or a sport or fashion
magazine. Try to access as many different reading materials as you can and make
reading part of your everyday life.
Ongoing Concerns
Young Adults
1
2
If your son or daughter is seeking enrolment at a higher educational institution
(e.g.: University or TAFE) there are various support options available. Contact can
also be made with the disability services department of their chosen institution.
Provision can be made for special considerations and misadventure allowing
additional time for assessment tasks, modified tasks or examination support. (See
Chapter 4)
3
The RMHC Charlie Bell Scholarship provides financial assistance towards
vocational studies for young adults who have experienced serious illness. (See
Resources and References).
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1
2
Ongoing concerns
If you have concerns about your child’s development during the
adolescent years you can discuss these with your medical team, hospital
school/hospital education services staff or home school staff. You may
want to seek more information to better understand your child’s needs.
strengths and areas where they may need some more help. They are
• Private providers following a referral from your
own doctor
Assessments that may be conducted at this age include:
at the general intelligence of an individual. Two common
psychometric tests are the Wechsler Intelligence Scale for
Children – Fourth Edition – Australian Standardised Edition
– (WISC-IV) and the Woodcock Johnson Cognitive Abilities
Battery - Australian Edition (WJ-III). These tests incorporate
subtests that can help in evaluating the student’s strengths
and weaknesses in areas such as understanding language,
concentration, general knowledge and the ability to perceive and
plan a task. These are usually conducted by a psychologist.
assessment examines the cognitive functioning of an individual in
above) as well as utilise a range of tests to look at a how a person
learns, retains information, visually understands information
and how they think through problems and tasks (called executive
functioning – see Chapter 4). This assessment is conducted by a
neuropsychologist.
Edition (WJ-III) and the Wechsler Individual Achievement Tests
based on the adolescent’s needs. These assessments are usually
• Behavioural Assessment – A behavioural assessment looks at
how your child is developing in a social and emotional sense when
compared to other adolescents of a similar age. It may consider
aspects of daily living skills, anxiety, aggression, depression,
adaptability, attention or social skills.
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1
2
UPPORT
S
E
IN
L
N
O
D
N
A
N
“EDUCATIO
EARLY
WAS VIATL IN THE
INS SO. “
A
M
E
R
D
N
A
S
H
T
N
MO
Behavioural assessments usually consider the views of the parent, teacher
and often the adolescent via a self report form. These are usually conducted
by a psychologist.
• Speech Assessment – A speech assessment will look at all aspects of your
roles (this includes the tasks they need to perform in self-care, sport and at
school) and an array of external or environmental factors. In adolescence
the writing requirements of school may cause concern. The use of assistive
technology in the form of modified laptops or IPads may benefit your child.
• Vocational Assessments - Vocational assessments can help a student
explore their strengths and future employment and study goals. School
careers advisors and/or school counsellors/guidance officers may work with
the student for on vocational considerations.
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School
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Ongoing Concerns
Young Adults
AVING
H
F
O
S
IC
M
A
N
Y
D
“THE
ND MADE
U
O
R
A
S
ID
K
R
E
H
T
O
ERENCE
F
IF
D
S
U
O
M
R
O
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AN
NT….HIS
E
M
E
G
A
G
N
E
S
’
N
H
O
TO J
AND HIS
SELF CONFIDENCE
EING. “
EMOTIONAL WELL-B
• Outline strategies to help an adolescent who has experienced cancer
• Communicate the nature of infectious illnesses to others and how it may
affect your child if they are receiving treatment.
• Understand social skill development
• High School Information Page
• Examination Support
• The Young Adult section
• Beyond School
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Returning to study
Young Adults - 19 to 24 years old
By now the formal school years are complete. Young adults will be looking to tertiary education such as university, college, TAFE or entering
into the workforce. They are considered adults and can legally vote, drive, drink and may enter into a serious relationship. It is a time of
transition in many ways. This includes where they choose to live, study and work.
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The decisions made at this time by young adults, will have a large impact on their
future in relation to education, career and lifelong learning. Aside from education
and career choices there are many major milestones faced as an adolescent moves
into the adult world.
Some of these include:
• Independent living skills
• Work/study opportunities
• Money management
• Sexuality – fertility considerations
• More advanced abstract thoughts
• Questioning life and its meaning
Sporting activities may decline or change without the structure of school sports.
For some, new sporting activities or adventures may now be possible. Friendship
groups become broader as new connections are made outside the school system.
Some young adults may seek intimate relationships with a special partner. Social
activities may now involve late nights, trips away with friends, drinking and an
exposure to drugs.
Increased responsibility from parents and the broader community is placed on
young adults for them to study or obtain work. At the same time young adults
still require guidance, support and strategies for living, learning and working in
an adult world.
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Challenges for young adults with cancer
The incidence of cancer in young adults is higher than in all previous
age groups. The most common cancer types during the years of 1924 are: lymphomas, melanoma of the skin, leukaemias, cancer of the
thyroid gland, cancer of the testis and gynaecological cancers.
A cancer diagnosis can provide a significant challenge for a young
adult as well as the adults and carers around them. Just as they are
moving from the restrictions of the school environment and have
the opportunity to make their own decisions, they are hospitalised.
They have to depend on their parents and other adults in the medical
profession and decrease the amount of time they spend with peers.
This may lead to conflict between parents and the young adult.
Those who have been dealing with a cancer diagnosis since childhood
may now have to face new issues and challenges.
MA
“I THINK THEY FOR
DETERMINATION… A
GET
DETERMINATION TO
IVE!“
L
D
N
A
E
R
E
H
T
T
U
O
Issues of fertility and sexuality may be very real for some young adults
as they contemplate their future. They may have to make certain
informed medical decisions around treatment options and fertility.
Medical professionals can assist with questions and concerns relating
to this issue.
It can be very difficult to separate the medical and psychosocial issues
at this point and all young adults need support and understanding
during this time. More and more hospitals are providing Adolescent
Young Adult (AYA) or specifically designed youth services for cancer
treatment and follow up.
Anxiety, depression and post traumatic stress disorder may be
displayed by some young adults. Formal counselling or psychological
support should be offered if needed or if obvious stress becomes
unmanageable.
Young adults may question their mortality and their purpose in life.
This will have been raised due to their illness and their exposure to
other adults with cancer.
Research indicates that most young adults who manage cancer get
on with living; some engage in risk taking behaviours and some find
it hard to adjust. Just as some post traumatic stress may occur, post
traumatic growth may also occur. A young adult may experience
periods of both of these reactions. The post traumatic growth or
personal growth and maturity that may occur can involve a greater
understanding of self, relationships, personal strengths and an
appreciation of life.
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Returning to study
Returning to study or the workforce
Chapter 2 details specific cancer treatments and the possible effects that the
treatment may have on development and education. Treatment effects may take
years to be fully known and it is important to monitor how your son or daughter is
progressing and coping.
Possible areas for support and or intervention include:
• Independence from family
• Taking responsibility for health needs
• Support group involvement e.g.: CanTeen
• University Educational Access Schemes & Special Considerations
• Transition to adult health care
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Supporting your young adult son or daughter
There are many ways in which you can support your child’s growing
mind and their emotional needs during young adulthood. Parental
involvement remains extremely important. Care, love and reassurance
are at the heart of this need.
Contact with other young adults is very important. Social networking is
very much a part of many young adults’ lives and this can be utilised to
stay in touch with friends and family. This may occur via the internet,
email, Facebook, mobile phones etc.
Attention and Concentration: Sometimes treatment for cancer may
lead to changes in an individual’s ability to maintain their attention and
concentration. Simple strategies to help a young adult cope with the
demands of the workforce or post school education can include:
• keeping a diary
• audio recording tasks
• making a list
• structuring tasks and breaking them down into smaller parts
• structuring rest breaks
• setting realistic goals
A young adult will be an active part of all treatment discussions and
decisions.
Assist and encourage involvement in cancer support groups such as
CanTeen. This provides the opportunity to meet other young adults
who have been through similar experiences. Many young adults go on
to become leaders and mentors through these support groups. There
are also many suitable support groups available on the internet (See
Resources and References).
If your son or daughter is enrolled or seeking enrolment at a higher
educational institution (e.g.: University or TAFE) there are various
support options available. They will need to contact the disability
services department of their chosen institution. Provision can be made
for special considerations and misadventure allowing additional time for
assessment tasks, modified tasks or examination support. (See Chapter
4)
The RMHC Charlie Bell Scholarship provides financial assistance
towards vocational studies for young adults who have experienced
serious illness. (See Resources and References).
If your son or daughter is unsure about what path to go into after school
you may like to seek a vocational assessment. This can help a student
explore their strengths and future employment and study goals. These
can be accessed through community services, private psychologists or
counsellors.
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• Beyond School
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GY
“I THINK TECHNOLO
ER TO
W
S
N
A
E
H
T
E
B
D
L
COU
ERE.”
H
S
M
E
L
B
O
R
P
F
O
A LOT
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PRACTICAL ISSUES
Beyond School
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
This chapter provides information about specific practical issues such as returning to school, siblings, support groups, executive functioning and
what examination support may be available. An outline of each topic area is provided below.
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RETURNING TO SCHOOL
As soon as medically possible it is important that your son or daughter is
encouraged to return to school. In the beginning this may be on a part-time or
half day basis. School not only provides the opportunity for academic learning,
but just as importantly, it is time for your child to be with and learn from their
friends and classmates.
Before your child returns to school
• Request a central contact person at your child’s school for all
communication and try to maintain regular contact.
• Meet with the social worker from the oncology ward to discuss any concerns
and the services that may be available to assist your child and family.
• If there are ongoing medical issues, arrange for an Oncology Outreach
Nurse or Clinical Nurse Consultant to visit your school to speak to staff and
possibly students.
• Ensure the school is aware of the need to notify you immediately of any
infectious illnesses such as chicken pox. A sample letter that the school can
use is included in Chapter 5.
• If your child is in preschool or primary school, contact Camp Quality to
consider arranging for the McDonald’s Camp Quality Puppets to visit the
school.
• If your child is in High School, contact Camp Quality to consider arranging
for the new Camp Quality High School Performance to visit the school.
• Keep a calendar at home to mark treatment dates, planned visits to the
hospital, clinic visits and visits to the school.
• The transition time from primary school to high school can be a particularly
vulnerable time for a child with cancer. Additional communication with
both schools will be very important to assist your child through these extra
changes in school, routines, peer groups, classes, travel etc.
1
2
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How to support
• Be aware of siblings’ feelings and reactions. See Siblings Page in this
Chapter.
Signs that help
• You may want to request part time attendance e.g.: half days, late starts or
early finishes.
• Take an active role in any learning support or team meetings arranged by
the school.
Options
Beyond School
• Ask the school for extra copies of books so that your child does not need to
carry them to and from school.
Social, Environ &
Behav.
• Provide your child and his/her siblings with age appropriate information
regarding the condition so that they can explain it if they are asked about it.
Siblings
• Be willing and open to accept support from the school community.
When your child has returned to school
Looking after
yourself
What is Exec.
Function?
Examination
Support
• Talk regularly with your child about how things are going. Ask them about
what is going well and what may be difficult for them.
• As absences may still occur from time to time, try to encourage your child to
continue with some aspects of their school work when they are well enough.
Work may be provided by the child’s school or from the hospital school/
hospital education services.
• Be aware that some treatment may cause changes to your child’s
concentration and organisation skills.
• Contact the Ronald McDonald Learning Program (see Chapter 6) to arrange
an educational catch up program for your child. The majority of children
who have received treatment for cancer are eligible for assessment and
educational support through this program.
• Maintain regular contact with your central school contact person.
1
2
• Provide your school staff with the Information Support Pages in Chapter 5
which are relevant to your child’s age. These pages provide an overview of
cancer treatment issues and support options that school staff may be able to
provide.
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RETURNING TO SCHOOL
Do you need more help?
Your child may need ongoing support from parents and other professionals
throughout their schooling and development. There may be times when
everything proceeds well after returning to school and then out of the blue
everything seems to be falling apart. It is very important to keep an eye out for
signs that your child is experiencing difficulties. There are many people with
whom you can discuss these concerns.
Additional support may be required for your child depending on their individual
needs.
Signs that your child may need some additional support
• Refusing to go to school even when well enough
• Friendship concerns
Looking after
yourself
• Falling behind
What is Exec.
Function?
• Being constantly disorganised or misplacing items
Examination
Support
Extras
• Lowered test results even after help has been put in place
• Not wanting to participate in any out of school activities
• Tears, moods or tiredness which regularly impacts upon school attendance
You can discuss these concerns with:
• Your school counsellor/guidance officer
• Your doctor
• Oncology social worker
• Oncology psychologist
• Classroom teachers
• School principals
• A private psychologist
• Friends and family
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How to support
Signs that help
Options
Beyond School
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
Possible support options may include:
• Holding a team meeting with school and possibly medical staff
• Modified school work
• Seeking extra assessments such as occupational therapy or speech therapy
• Seeking a better understanding of learning needs and strengths via an
academic, IQ or neuropsychological assessment
• Arranging for individual or group counselling for your child
• Involvement in support groups such as Camp Quality, CanTeen etc.
EED
“…YOU ACTUALLY N
HE
SOMEONE WHO IS T
EEN
CONNECTION BETW
OOL..”
H
C
S
E
H
T
D
N
A
U
O
Y
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Issues
Communications
strategies
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
BEYOND SCHOOL
If your son or daughter has finished school there are still many issues to
consider. Parents play an important role as they guide their young adult into
the adult world of education, employment, relationships, independent living,
finances and healthcare.
Whether or not your son or daughter wants to share aspects of their cancer
treatment and experience is a personal choice. This includes communicating
information to employers, higher education institutions, friends and family.
Some young adults are happy to talk about the many aspects of cancer while
others prefer to keep the information private. Sometimes it can be difficult for
both the young adult and the parent to grasp what should and should not be
communicated.
Some considerations to keep in mind when deciding what information is passed
on to others include:
• Is there a medical need that others should be aware of e.g.: daily medication
requirements or activity restrictions?
• How will frequent absences from work or university be managed?
• Do you need to have your employer’s support?
• Are there legal reasons associated with communicating or withholding
information e.g.: for travel insurance or bank loans?
• Would it be helpful to request a letter from the oncologist to explain
absences, health status, restrictions or medical needs?
POSITIVE
Y
L
L
A
E
R
A
T
O
G
“SO I THINK HE’S
GOT HIM
S
’
T
A
H
T
K
IN
H
T
…I
E
D
ATTITU
THAT.”
F
O
D
U
O
R
P
Y
R
E
V
THROUGH AND I’M
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Issues
Communications
strategies
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
BEYOND SCHOOL
Ways that you can help your son or daughter:
• Ensure that they have a calendar, diary or phone app to mark
treatment dates, planned visits to the hospital etc.
• Explain how Medicare and Health Funds work.
• Ensure your son or daughter has and carries their own Medicare
card.
• Reach out to others for support from both friends and the broader
community.
• There are many different types of allowances and pensions that
may be available to a young adult including:
• disability payments
• health care cards
• youth allowance
• mobility allowance
• rental assistance
• Encourage your son or daughter to contact the Department of
Human Services (previously called Centrelink) to discuss what
services may be available. Assist with the preparation of required
paperwork.
• Discuss medical restrictions which may apply to sport or physical
activities.
• Ensure that your son or daughter knows who to call in an
emergency.
• Talk regularly about how things are going. Ask them about what
is going well and what may be difficult for them.
• There are various services and organisations available to
assist with managing higher education, apprenticeships and
the transition to work. e.g.: The University Educational Access
Schemes & Special Considerations programs. Assist your son or
daughter to explore the various options that may be available.
• Discuss their options with key people at your child’s school as
they approach the end of their final year.
• Consider whether any scholarships may be available to assist with
the early years beyond school e.g.: RMHC Charlie Bell Scholarship
or The Redkite Education Scholarship.
• Would your son or daughter benefit from involvement in a
support group such as CanTeen or RedKite?
Is more help needed?
Young adults may need ongoing support from parents and other
professionals. There may be times when everything seems to be
progressing well and then out of the blue everything seems to be falling
apart.
You can discuss these concerns with:
• A University or TAFE Counsellor
• Your doctor
• Oncology social worker
• Oncology psychologist
• A private psychologist
• Friends and family
• Transition Care Coordinators
If issues become more serious and involve workplace discrimination or
medical complaints, contact can be made with:
• The Australian Human Rights Commission
• The National Children’s and Youth Law Centre
Please Note: Websites for many young adults and beyond school
services are provided in Chapter 6.
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Social, Environ
& Behav.
Changes
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Looking after
yourself
What is Exec.
Function?
Examination
Support
For a child who has experienced cancer, this process may be
significantly interrupted due to their changed opportunities to interact
with others.
• Involves the child sharing, cooperating, taking turns and
negotiating with other children and adults.
• Many of these skills are developmental and take time to learn.
Social development is strengthened when a child:
• Has secure relationships with parents, teachers and significant
others.
• Feels good about themself.
• Has the opportunity to play with friends and other children.
Many children with an illness experience difficulty adjusting to their
medical condition and may develop poor self-esteem. Most children
want to blend in, not be different and not be known as “the kid who had
cancer”.
1
2
Extras
Social and emotional development from childhood through to adulthood is an ongoing process. Children grow and learn through watching how
other children and adults act, react and behave towards each other.
• Is the way a child learns to get along with others and enjoy the
people in their life.
Siblings
For Teachers
& Schools
SOCIAL, ENVIRONMENT & BEHAVIOUR
Social development:
Strategies
Practical
Issues
Your child may experience:
• A sense of regret for the period of time lost because of the illness.
• Feelings of anxiety and uncertainty in relation to his/her future
life.
• A time of mental readjustment as a result of the illness, surgery
and/or treatment.
• A more mature response to situations due to their experiences.
• Times where they question whether they still ‘fit in’ with their
friends.
• Periods of trying to manipulate parents and friends.
• Unexpected changes in attitude toward many different things.
• Changes in behaviour e.g.: withdrawn, angry, moody,
uncooperative.
Maintaining the child’s involvement in school as much as possible
is vitally important. Social and emotional well-being will be much
improved if peers are accepting of the changes associated with your
child’s condition such as appearance, attendance, moods etc.
Wherever possible maintain contact with friends while in hospital and
at home. Where this is not possible other communication channels
should be used such as:
• Phone calls
• Email
• Facebook
• Sms
• Skype etc
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Social, Environ
& Behav.
Changes
Strategies
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
OF
“SHE’S GOT A LOT
SKILLS
DIFFERENT SOCIAL
G NOW
IN
D
IN
F
E
R
’
E
W
H
IC
WH
K”
A
E
R
B
O
T
D
R
A
H
E
AR
These contacts are not a substitute for the social experiences that have been lost
but they can help in bridging the gap.
Questions from children about their friend’s condition and or treatment need to
be answered honestly and accurately with the permission of the child and their
parents. A child may need to be taught how to manage questions and queries
from others, especially curious people who may ask insensitive questions. Peers
especially need to be told they cannot catch the illness from the child and need to
know how to behave towards the child when they return to school.
Questions that may need to be answered include:
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
• How can I help?
• Will I catch the illness?
• Why have you lost your hair?
For some children who have experienced a long time without participating in
the usual activities with their friends the teaching of some social and interaction
skills may be necessary. Such skills may include:
• How to answer questions about the illness, including questions about
appearance, or absences.
• How to commence and maintain a conversation.
• How to manage and respond to problems encountered with friends and peer
group members.
• How to manage feelings of anger and frustration.
• How to behave in a socially acceptable manner in the classroom, in the
playground and when on excursions.
• How to ask to be excused from class.
1
2
• How to seek assistance when administering medication or when feeling
unwell.
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Social, Environ
& Behav.
Changes
Strategies
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Strategies for parents and teachers
• Respect a child’s thoughts and listen to their feelings and opinions
on medical treatment and their personal experiences.
• Ask the child if they would like to tell the class about their illness
or if they would like someone else to do so.
• Do not make or force a child to talk about their illness or ask them
in a public environment if they would like to share.
• Show interest in the child’s achievements by asking questions and
making comments. Interest is far more important than praise.
• Provide the child with rules and guidelines about expected
behaviour in different situations.
• Ensure the child understands they need to accept responsibility
for their actions and to face the consequences if something
undertaken or promised is not completed.
• Model appropriate behaviour for the child in a variety of different
social situations.
• Provide immediate feedback and recognition when the child
behaves appropriately in different social situations.
• Consider whether changes in executive functioning may be
affecting the child’s behaviour and utilise strategies if required.
See the section on Executive Functioning.
• Use social stories to help young children “navigate” a difficult
social situation. Social stories are little books which use words or
pictures to show how to respond to a particular situation.
• Talk to the child about communication skills and the importance
of observing social courtesies at the appropriate time e.g.: please
and thank you.
• Encourage the child to talk about what has happened each day,
whether they are in hospital, at home or school.
• Teach the child to take the time needed to plan how to solve a
social problem or situation.
• Encourage relaxation by taking deep breaths, doing some gentle
exercise or by listening to music.
• Give clear instructions when asking a child to do something.
The Social and Emotional Changes section has been modified from content first published in
EDMed: Ronald McDonald Learning Program Education Medical Guidelines (2009) Ronald
McDonald House Charities Australia.
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Home
Intro/Start
Educational
Pathways
Beyond School
Siblings
Challenges
Reactions
Support
Looking after
yourself
What is Exec.
Function?
Examination
Support
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
SIBLINGS
Returning to
school
Social, Environ &
Behav.
Cancer
Information
“BUT IT WAS
REALLY HARD ON
THEM, REALLY
HARD.”
Brothers and sisters are extremely important within the care of the child or
adolescent with cancer. Siblings are seriously affected by the cancer diagnosis
and treatment regime. As such they may need just as much support over the
long term whether their distress is obvious or not. They face issues particular
to their situation.
Some of the challenges that siblings may face include:
• Separation from parents and family members.
• Relocation if the family has to move to be closer to the child in hospital.
• A lack of parent availability at times.
• Changed family practices and routines e.g.: after school arrangements if one
parent is at work and the other parent is at the hospital.
• Interruptions to schooling.
• Questions and uncertainty of their own about the cancer.
• Worry and fear about the sibling with cancer.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Challenges
Reactions
Support
Looking after
yourself
What is Exec.
Function?
Examination
Support
Practical
Issues
For Teachers
& Schools
Extras
Some of the responses or reactions that siblings may display include:
Beyond School
Siblings
Ed Pathways
by Group
SIBLINGS
Returning to
school
Social, Environ &
Behav.
Cancer
Information
“BUT IT WAS
REALLY HARD ON
THEM, REALLY
HARD.”
• Anger
• Silence
• Withdrawal from usual activities
• Confusion
• Changes in academic performance
• Anxious behaviours
• Refusal to cooperate
• Amazing strength
• Insisting on extra responsibility
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Challenges
Reactions
Support
Looking after
yourself
What is Exec.
Function?
Examination
Support
Practical
Issues
For Teachers
& Schools
Extras
Ways to support siblings:
Beyond School
Siblings
Ed Pathways
by Group
SIBLINGS
Returning to
school
Social, Environ &
Behav.
Cancer
Information
“BUT IT WAS
REALLY HARD ON
THEM, REALLY
HARD.”
• Be honest about the situation and the changes being experienced by
everyone.
• Provide reassurance and comfort.
• Encourage the expression of feelings.
• Arrange for regular visits to the brother or sister who is in hospital. Be
mindful that sometimes a siblings may not want to go.
• Arrange for special parent and sibling time e.g.: movies, footy or shopping
day.
• Actively involve the support of their friends and mentors.
• Communicate with schools early and as regularly as possible to save the
sibling having to explain absences or any difficulties. A Sibling Support
Sheet is located in Chapter 5. This can be filled out and passed on to school
staff.
• Communicate with any sport, music, dance teachers or coaches. Ask for
help with transport to training or weekend games if needed.
• Remain alert to any behaviour changes and seek further support if needed.
• Arrange for reliable caregivers or relatives to help keep the siblings’ routine as
normal as possible.
• Talk with other parents who may have a child in a similar situation and
discuss approaches.
• Find out about sibling activities that may be provided through your hospital.
• Seek professional help if there are ongoing concerns.
• Link in with groups such as CanTeen, Camp Quality etc., which offer
comprehensive support activities for siblings. Explore websites such as
SuperSibs or Siblings Australia (See Resources and References).
WHAT ABOUT SCHOOL?
Home
Returning to
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Beyond School
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
LOOKING AFTER YOURSELF
Having a child with cancer will impact upon your life in many and varied ways. It may affect your health, emotional state, financial situation,
personal relationships and work. However, in the middle of everything that is involved with a cancer diagnosis and treatment regime, parents
need to look after themselves and their family.
Increased levels of parental stress have been shown to be quite common
in the first year following a diagnosis of cancer in their child. Kupst, a
family researcher, has identified that while stress levels are obviously
higher, families of children with cancer have no greater maladjustment in
the long term than other families.
Psychologist John Spinetta has conducted extensive work with families.
When he asked parents what has most helped them function throughout
the course of cancer treatment, 5 key characteristics emerged.
• Having a positive philosophy of life – accepting the diagnosis and
approaching treatment in a spirit of optimism and hope.
• Having a strong support network – both with family, friends
and other parents who are in a similar situation. Because men
and women communicate differently, it is critical to have a social
support system beyond the marriage or family relationship, so
the male and female do not place unrealistic expectations on their
ability to support each other.
• Communicating well with their child - Children diagnosed
with cancer have a right to know the truth at their own level of
understanding.
• Having open communication with the child’s brothers and sisters
- Siblings also have a right to know the truth at their own level
of development. Try to be careful not to overburden or place too
many additional responsibilities on siblings. (See Sibling Pages in
Chapters 5 and 6)
• Keeping family life as normal as possible - This includes parents
maintaining their own personal and intimate lives as far as
possible. An effective way of communicating that they are going to
get well is to send the child with cancer back to school as soon as
medically possible and discipline them the same as if they did not
have cancer.
As Spinetta says, whilst looking after themselves, their child and
siblings, parents can help their children learn lifelong coping skills and
strategies.
It is important for parents to recognise and handle their own stresses
because this may affect how your child deals with the challenges of
cancer. Specific support and counselling services are available for
parents of children with cancer.
See Chapter 6 Resource Pages and Links for further support
information.
PULL IN
O
T
D
E
T
R
A
T
S
E
…W
“SO
OMETIMES
S
.
S
T
C
A
T
N
O
C
Y
IT
COMMUN
IMES IT
T
E
M
O
S
,
S
U
O
T
E
M
THEY CA
IMES I
T
E
M
O
S
D
N
A
D
E
N
E
JUST HAPP
WENT SEARCHING.”
WHAT ABOUT SCHOOL?
Home
Returning to
school
Beyond School
Social, Environ &
Behav.
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
WHAT IS EXECUTIVE FUNCTIONING?
Executive functioning is a general term that describes how each person
consciously controls their thoughts, emotions and actions.
Executive functioning is critical in the classroom situation where so much learning
occurs. Executive functioning skills include activities such as:
• planning
Siblings
• organising
Looking after
yourself
What is Exec.
Function?
• using working memory
• being self aware
• managing emotions
• planning actions
A child who has undergone cancer treatment may experience changes to their
executive functioning. This may be due to some forms of cancer treatments (see
Chapter 4)
Difficulties
Strategies
Examination
Support
Executive functions become increasingly important and central to a child’s
academic progress as they develop and mature.
They are essential in secondary school when students will be involved in
more difficult tasks that involve more complex planning, prioritising and
communicating ideas.
Disruption in executive functioning skills may also lead to disruption in the
classroom. A child or young person who is experiencing executive functioning
difficulties may present with behavioural difficulties as they try to manage their
abilities.
1
2
WHAT ABOUT SCHOOL?
Home
Returning to
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Beyond School
Social, Environ &
Behav.
Siblings
Looking after
yourself
What is Exec.
Function?
Difficulties
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
All children, adolescents and adults too, will experience times when
their executive functioning skills are not what they could be. It
becomes a concern for a child or adolescent when these skills do not
appear to be developing or are leading to a child struggling more than
necessary with day to day tasks.
What is it used for at school?
How can you help?
Skills associated with executive functioning for students at school
include:
It can be difficult to identify the areas where a child or adolescent is
experiencing difficulties in relation to executive functioning problems.
There are some assessment tools available which a school counsellor/
guidance officer, a psychologist or a neurospsychologist may be able
to use in order to more clearly identify areas of difficulty and strength.
It is best to seek further advice or assessment if you have ongoing
concerns.
• changing thoughts from one thought to another
• maintaining concentration
• being able to start and stop personal behaviours
• planning tasks or actions
• monitoring emotions
• following a timetable
• abstract reasoning
• remembering and recalling information
• developing new ideas
• being able to stop negative or inappropriate responses
• rule learning
• displaying appropriate behaviour
• recalling and working with information
1
2
Extras
Many executive functions, such as organisation, sequencing and
time management, may need to be explicitly taught to children with
executive functioning issues. That means that they need to be shown
each individual step needed to carry out and develop a particular skill
such as planning for a task.
• priority setting and time management
Examination
Support
For Teachers
& Schools
• getting started on a task
Strategies
Practical
Issues
It is important to remember that the development of executive
functioning skills is a natural process and all children and adolescents
need time to develop these skills.
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Strategies
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Support
Ed Pathways
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Practical
Issues
For Teachers
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Extras
Practical strategies that can be used at home and in the classroom
Beyond School
Siblings
Cancer
Information
Returning to
school
Social, Environ &
Behav.
Educational
Pathways
Parents can...
• Help a child to get their books and school
materials organised and possibly colour
coded.
• Support your child in the use of a diary or
calendar.
• Set aside a specific area at home for your
child’s homework, school tasks, books, bags
etc.
• Use a term planner displayed at home to
monitor due dates of school assessment tasks
or events.
• Encourage your child to break difficult tasks
down into small steps – whether that is in
planning a social activity or in planning an
essay.
• Keep the number of things that you ask your
child to do at once to just one or two tasks.
• Develop a homework routine for the school
week.
• Teach your child to self-talk and to ask:
What am I supposed to be doing? Am I
doing it? What is the next thing I need to do?
• Help your child learn their times tables,
number facts and spelling rules until they
become automatic for your child.
• Create a simple colourful chore list for home
responsibilities.
• Provide encouragement and support for all
efforts.
Teachers can...
• Provide the student with printed copies of class notes.
• Break tasks down into small manageable steps (chunking).
• Help the student to overlearn rules until they are automatic e.g.: ‘i before e except after c’ and times
tables.
• Identify specific steps or items in a checklist of what the child needs to do, and have the child work
through the checklist in order, marking off each step as it is completed.
• Provide verbal reminders and written prompts about what the child is expected to do.
• Teach the child to self-talk and to ask: What am I supposed to be doing? Am I doing it? What is the next
thing I need to do?”
• Write class rules, put them in a prominent place, and remind the child of these rules on a regular basis.
• Use pictures and mind maps to provide visual prompts to help a child organise his/her thoughts,
especially when introducing new material.
• Have the child keep a spiral notebook where they can write all rough notes – a book is less likely to be
lost than loose sheets of paper.
• Provide a note-taking template to help a child organise important information and to separate important
facts from less important facts.
• Use different coloured post-it notes to help the child organise essay ideas and to tag work as being high,
medium or low priority.
• Cover each exercise book, text-book and folders for each subject in the same colour – e.g.: English could
be white and Mathematics red.
• Use mnemonics or memory tricks such as acrostics and acronyms to help the child to learn factual
content.
• Let a child practise spelling words by using magnetic letters rather than having to write the word in a
sentence.
• Provide the child with a count-down timer that shows how much time is left to complete their work.
• Provide an audio cue for a child who has difficulty sustaining attention – when a sound occurs the child
must ask “Am I doing what I am meant to be doing?”
• Use a phone or a watch with an alarm for an older child to message the child to remind them of a
particular activity, or to take medication, etc.
• Minimise interruptions or interference while a student is working.
The Executive Functioning information has been modified from content first published in EDMed: Ronald McDonald
Learning Program Education Medical Guidelines (2009) Ronald McDonald House Charities Australia.
WHAT ABOUT SCHOOL?
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Beyond School
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Siblings
Looking after
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What is Exec.
Function?
Examination
Support
NAPLAN
Senior Exams
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
EXAMINATION SUPPORT
Special Examination Provisions are practical arrangements designed to help
students who couldn’t otherwise make a fair attempt to show what they know in
an exam room. Special Provisions may be accessed by a student for all or part
of the exam and should reflect the type of support that is generally provided to
the student in the classroom
This form of support may include:
• A scribe (writer) – when a student has difficulty writing due to medical
conditions, experiences excessive fatigue of hands or upper limbs due to a
medical condition or has a processing difficulty.
• A reader – to read the questions only.
• Large print, coloured overlays or Braille.
• Assistive technology such as computer use.
• Separate supervision in a room away from other students – for example if
medical assistance is required during the exam, if a scribe or reader is used
or if extra time or rest breaks are required.
• Extra time.
• Rest breaks.
WHAT ABOUT SCHOOL?
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Beyond School
Social, Environ &
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Siblings
Looking after
yourself
What is Exec.
Function?
Examination
Support
NAPLAN
Senior Exams
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
EXAMINATION SUPPORT
National Assessment Program - Literacy and Numeracy (NAPLAN)
The National Assessment Program – Literacy and Numeracy involves national
testing of Literacy and Numeracy skills in both Primary and High Schools. These
exams are usually held in May each year.
If a scribe or a reader is required, this person must be an adult, either a teacher or
support person who has received training in this form of assistance. If this form
of assistance is required, it is recommended that the scribe or reader completes
some practice sessions with the student prior to the formal assessment.
How to seek Special Provisions?
The decision to provide Special Provisions for the NAPLAN is made in
consultation with parents, the Principal and the Learning Support Team in the
school. It is recommended that parents speak with their school principal about
any possible support early in the school year.
There are specific guidelines for the use of a scribe or reader and any assistance
should reflect what is normally provided in the classroom. Principals need to
submit applications for some forms of support to the NAPLAN Assessment
bodies associated with their school type and state/territory. There will be a form
provided to parents which identifies the special provisions that will be in place.
This needs to be signed by the parents.
Further information is available on the
NAPLAN website: http://www.naplan.edu.au
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Function?
Examination
Support
NAPLAN
Senior Exams
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
EXAMINATION SUPPORT
Senior Exams
There are currently State and Territory based senior examinations for students
across all school systems. Specific requirements for seeking special provisions for
examinations are determined by the Education Boards in each State or Territory
e.g.: The Board of Studies in NSW.
How to seek Special Provisions?
Special Examination Provisions are determined via an application process.
Each application is individually assessed to ensure equity and consistency.
Applications are usually made via the School counsellor/guidance officer,
Principal and Learning Support Team in the school.
Evidence of a student’s need and difficulty is required for the application.
Evidence may include test results in skill areas such as reading or writing, essay
examples, psychometric test results (e.g.: IQ results), medical reports and teacher
comments.
It is recommended that applications are made at the end of the year prior to
when the senior exams will be held. If a student who is preparing for senior
exams becomes too unwell to proceed with the exams, forms such Misadventure
or medically based forms may be submitted closer to examination time. It is
recommended that this is discussed with school staff as soon as possible.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
FOR TEACHERS & SCHOOLS
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Many teachers will not have had the experience of having a child in their class with cancer. In this chapter you will find a range of support pages and
letters. These pages can be photocopied and handed to school staff or support people. They will help communicate information about your son or
daughter’s educational needs. An outline of each page is included below.
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Cancer in early
childhood
Cancer Treatment
Supporting the child
Strategies
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
SUPPORTING PRE SCHOOL STUDENTS
Cancer in Early Childhood
Early childhood is a time of rapid growth and increasing independence for all
children as they develop their ability to move, think, play, imagine, communicate
and interact with others. This can be a very vulnerable age for a young child to
receive a cancer diagnosis due to the rapid growth and development in these early
years of life. Thankfully, treatments for cancer for this age group take into account
the vulnerability of young children. All possible attempts are made to try and
avoid the most invasive treatments.
Cancer is when some of the body’s cells become faulty, grow uncontrollably
and multiply. They invade and damage surrounding tissues and may extend
(metastasise) to other parts of the body.
In Australia there are approximately 1170 children, adolescents and young adults
diagnosed with cancer each year. Approximately 80% of children and adolescents
diagnosed with cancer will be survivors. Cancers in the early childhood group
occur more often than in children aged between 5 and 15. The most common
cancer types at this age include leukaemias, cancers of the brain and central
nervous system as well as kidney and other soft tissue cancers.
Fortunately advances in medical treatments are keeping more children diagnosed
with cancer alive. These children require structured support from preschools and
the community to keep them engaged in learning and involved with their friends.
EMBER
M
E
R
T
’
N
D
L
U
O
C
E
““SH
AMES
THE CHILDREN’S N
. IT WAS
L
O
O
H
C
S
E
R
P
M
O
R
F
HEARTBREAKING.”.”
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Cancer in early
childhood
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Cancer Treatment
Childhood cancers usually result in long periods of hospitalisation and many
years of follow up. While there are particular treatment protocols based on cancer
type; the duration and the response to treatment can be different for each child.
Cancer Treatment
Strategies
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
1
Intro/Start
2
Treatment may include:
• surgery
• radiotherapy (This may involve the brain and
spinal cord)
• chemotherapy
• bone marrow transplant
Treatments may be given in combination. Extended treatment regimes may include
the insertion of central venous (into the vein) access devices to assist with the
administration of drugs.
Treatment is provided to children at major specialist hospitals and many families
will need to travel long distances. This often creates additional stress and financial
strain on the family especially as treatment can continue for several years. Families
from country regions will often stay at places such as a Ronald McDonald House
while their child undergoes treatment.
For some cancers and most commonly for Acute Lymphoblastic Leukaemia, (ALL)
children may receive intensive chemotherapy for a period of weeks or months
before commencing what is commonly referred to as maintenance chemotherapy
which may continue for a period of months to years. For example: ALL is often
treated with 6-8 months of intensive chemotherapy followed by 18 months of
maintenance chemotherapy.
While a child is experiencing intensive chemotherapy treatment they are unlikely
to be well enough to attend preschool or a day care centre. This is the period
when short term side effects will be most intensively experienced.
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Cancer in early
childhood
Cancer Treatment
Strategies
Supporting Primary
Students
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
By the time a child either completes treatment or commences
maintenance chemotherapy they may begin to spend less time in
hospital and more time at home. They may also experience longer
periods of feeling well. Children often start to return to some of their
previous activities such as preschool or play groups during this period,
however, many will experience side effects of treatment.
During and after treatment children can experience a range of short
term and long term difficulties.
Short term treatment effects may include:
• nausea, vomiting and diarrhoea
What is Fatigue?
• changes in the child’s physical appearance e.g.: hair loss, weight
loss or weight gain (this may include facial swelling)
School Year
Summary
Sibling Support
Letter
• low energy levels e.g.: fatigue and lethargy
• abnormal hormonal function that may affect growth patterns
• changes in appetite
• dry skin, eyes and mouth, and mouth ulcers
• increased vulnerability to infections
• hearing loss - high tone deafness may occur after treatment with
certain drugs
• vision problems
• seizures
• heart problems – including reduced heart function resulting in
shortness of breath, chest pain or palpitations and reduced tolerance
for exercise
1
2
For Teachers
& Schools
Extras
Supporting High
School Students
Infectious Illness
Letter
Practical
Issues
Long term treatment effects may include:
tasks
• difficulty sustaining attention
• ongoing fatigue
• sun sensitivity and other skin disorders
• difficulty following instructions
• learning difficulties
• difficulty with fine motor skills
• difficulty with planning, organising materials or solving abstract
problems which is referred to as executive functioning problems.
The possibility of learning difficulties emerging in the years following
treatment for cancer is a growing area of concern and research.
Increased attention nationally and internationally is resulting in
oncologists, educationalists, psychologists and other specialists
working together to better understand how to minimise the long term
effects of treatment with improved outcomes for the child and family.
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Cancer in early
childhood
Cancer Treatment
Strategies
Supporting Primary
Students
How can preschool and child care staff support a child with cancer?
There are many ways in which teachers and carers can help a child and their family.
Strategies may range from simply a supportive phone call, to accessing early
intervention assessment and support for the child if concerns are evident. Always
discuss proposed support strategies with the parents and monitor the outcomes.
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Preschool and day care staff provide
a very important role in supporting
the child, their development and
education.
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Cancer in early
childhood
Cancer Treatment
Strategies
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
1
2
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Strategies may include the following:
Communication
• Respect that the parents know their child best.
• Arrange for a central contact person from your centre. This saves
the parents from always speaking to a different person.
• Ensure families at the centre are aware of the need to inform the
preschool if their child has an infectious illness such as; measles
or chicken pox. Cancer drugs can impair the child’s ability to
combat infection, leaving the child open to viral infections.
Measles or chicken pox could have fatal consequences. If there is
a measles or chicken pox epidemic occurring at the preschool, the
family will need to be informed and the child will need to be kept
home according to medical protocols.
• Be proactive in maintaining communication with the family while
the child is receiving treatment and possibly absent from preschool
or daycare.
• Arrange for other children in your centre to prepare pictures,
photos, craft or even a video to send to the child.
• Develop a health and education plan.
• If the student has missed a significant amount of their preschool
years and is ready to start school they may be eligible for the
Ronald McDonald Learning Program which provides a catch up
program in the form of individual tutoring by a qualified teacher.
• Discuss with the parents the suitability of arranging for the
McDonald’s Camp Quality Puppets to visit your centre and speak
with the children about cancer.
WHAT ABOUT SCHOOL?
Home
Supporting
Supporting
Pre
PreSchool
School Students
Students
Intro/Start
Educational
Pathways
Cancer
Information
Strategies
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Practical
Issues
For Teachers
& Schools
Extras
• Contact Ronald McDonald House Charities for an EDMed Professional
Development session on chronic illness to be delivered to your preschool
staff.
Cancer in early
childhood
Cancer Treatment
Ed Pathways
by Group
Communicate with the child and
family; regularly, openly and
warmly.
Make Modifications
• Discuss the option of partial attendance if necessary.
• Be aware of restrictions which may need to be placed on any physical
activity.
• Re-arrange play and activity spaces if required.
• Allow the child to wear a cap, scarf or beanie on his/her head if hair loss has
occurred.
Assist the child and family
• Treat the child as a preschooler and not a patient.
• Be aware that this complex medical condition and treatment regime
may affect a child’s moods, attention and general behaviour. Make
accommodations for these possible changes and provide guidance as
required.
• Make up an activity box that the parents can take to the child at home or in
hospital. This may include blocks, puzzles, shapes, books or art and craft
items. Arrange to change the box contents regularly.
• Allow time to review and reinforce new facts, concepts, principles and skills
taught, as the child may have difficulty remembering new information and
material.
• Be aware of any siblings that you may also have in your care. They also
require support and understanding.
1
2
This information has been adapted and extended from content first published
in EDMed: Ronald McDonald Learning Program Education Medical Guidelines
(2009) Ronald McDonald House Charities Australia.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Cancer in primary
students
Cancer Treatment
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
SUPPORTING PRIMARY STUDENTS
Cancer in Primary School Students
For all children, the primary school years are a period of learning about the world
and others. Extended absences from school due to cancer treatment during this
time can be a major issue. Research has shown that the maintenance of peer
relationships and the opportunity for ongoing schooling activities provide a
supportive or buffering effect, preventing other long term adjustment issues for
children with cancer.
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
A child who is diagnosed with cancer during these formative years needs to have
their academic progress monitored and possibly supported for the duration of
their school years. It is well recognised through medical and educational research
that a student who has received treatment for cancer may experience a range of
long term treatment effects which may impact on their education.
Cancer is when some of the body’s cells become faulty, grow uncontrollably
and multiply. They invade and damage surrounding tissues and may extend
(metastasise) to other parts of the body.
In Australia there are approximately 1170 children, adolescents and young adults
diagnosed with cancer each year. Approximately 80% of children and adolescents
diagnosed with cancer will be survivors. Compared to other periods of childhood
and adolescence, the incidence rate for cancers during the primary school years
is lower than in other age ranges. For children who do develop cancers at this
time, the most common cancer types include: leukaemias, cancers of the brain and
central nervous system, lymphomas and cancers in the bone or cartilage.
Advances in medical treatments are keeping more children diagnosed with cancer
alive. These children require structured support from schools and the community
to keep them engaged in learning and involved with their friends.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Cancer in primary
students
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Cancer Treatment
Childhood cancers usually result in long periods of hospitalisation and many
years of follow up. While there are particular treatment protocols based on cancer
type; duration and the response to treatment can be different for each child.
Cancer Treatment
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
• surgery
• radiotherapy (This may involve the brain and
spinal cord)
• chemotherapy
• bone marrow transplant
These treatments may be given in combination. Extended regimes may include
the insertion of central venous access (into the vein) devices to assist with the
administration of drugs.
Treatment is provided to children at major specialist hospitals and many families
will need to travel long distances. This can provide additional stress and financial
strain on the family especially when treatment can continue for several years.
Families from country regions will often stay at places such as a Ronald McDonald
House while their child undergoes treatment.
For some cancers and most commonly for Acute Lymphoblastic Leukaemia, (ALL)
children may receive intensive chemotherapy for a period of weeks or months
before commencing what is commonly referred to as maintenance chemotherapy
which may continue for a period of months to years. For example: ALL is often
treated with 6-8 months of intensive chemotherapy followed by 18 months of
1
2
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Cancer in primary
students
Cancer Treatment
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
1
2
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
While a child is experiencing intensive chemotherapy treatment they
are unlikely to be well enough to attend school. This is the period when
short term side effects will be most intensively experienced. By the
time a child either completes treatment or commences maintenance
chemotherapy they may begin to spend less time in hospital and more
time at home. They may also experience longer periods of feeling well.
Children often start to return to some of their previous activities such
as school or social activities during this period, however, many will
experience side effects from treatment.
During and after treatment children and adolescents can experience a
range of short term and long term difficulties.
Short term treatment effects may include:
• abnormal hormonal function that may affect growth patterns
certain drugs
• vision problems
• seizures
• heart problems – including reduced heart function resulting
in shortness of breath, chest pain or palpitations, and reduced
tolerance for exercise
tasks
• ongoing fatigue
• learning difficulties
• difficulty with fine motor skills such as handwriting
•
difficulty with planning, organising materials or solving abstract
problems which is referred to as executive functioning problems
The possibility of learning difficulties emerging in the years following
treatment for cancer is a growing area of concern. Increased attention
nationally and internationally is resulting in oncologists, educationalists,
psychologists and other specialists working together to better understand
how to minimise the long term effects of treatment with improved
outcomes for the child and family.
Ensure there is regular contact
between the school and the family.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Ed Pathways
by Group
How can primary school staff support a child with cancer?
Supporting Primary
Students
There are many ways in which teachers can help a child and their
family. Strategies may range from simply a supportive phone call, to
accessing further assessments and support for the child if concerns are
evident. Always discuss proposed support strategies with the parents
and child and monitor the outcomes.
Cancer in primary
students
Cancer Treatment
recently reviewed Disability Standards for Education 2005, school
staff where the student is enrolled have a responsibility to assist with
the ongoing education of a child with cancer. Examples of assistance
may include: partial attendance, reduced workload, a modified
curriculum, online learning support etc.
Supporting High
School Students
What is Fatigue?
Specific strategies may include:
Communication
• Respect that the parents know their child best.
Infectious Illness
Letter
School Year
Summary
• Arrange for a central contact person from your school. This saves
Sibling Support
Letter
2
Cancer
Information
Practical
Issues
For Teachers
& Schools
Extras
Supporting
PreSchool Students
1
Educational
Pathways
• Ensure families at the school are aware of the need to inform the
school if their child has an infectious illness such as; measles
or chicken pox. Cancer drugs can impair the child’s ability to
combat infection, leaving the child open to viral infections.
Measles or chicken pox could have fatal consequences. If there
is a measles or chicken pox epidemic occurring at the school, the
family will need to be informed and the child should be kept home
according to medical protocols.
3
• Be proactive in maintaining communication with the family while
the child is receiving treatment and possibly absent from school.
• Ensure student and parent access to school websites, intranets,
portals and any applicable educational websites. Check that they
have any required passwords.
• Arrange for children in the child’s class to prepare pictures,
photos or craft to send to the child.
• With parental permission arrange for a phone, video or Webcam
link from the classroom to the child who is away. This keeps them
involved in classroom learning and activities.
• With parental permission enable email or internet communication
with the child. This can assist with both learning and friendship
contacts.
• Stay informed of medical treatments the student is undergoing.
The effects of medication may impact the student’s academic
performance and behaviour.
• Conduct a Learning Support Team Meeting to discuss
opportunities for ongoing learning and peer contact while the
student is absent, returning to school and in the years following
treatment.
• In consultation with the parents and the students ask the school
counsellor/guidance officer to monitor and support the student’s
academic and emotional progress.
• Ensure academic and or psychometric assessments are available
if necessary.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
• If the student has missed a significant amount
of schooling they may be eligible for the Ronald
McDonald Learning Program which provides
a catch up program in the form of individual
tutoring by a qualified teacher.
Supporting Primary
Students
Cancer in primary
students
• Discuss with the parents the suitability of
arranging for the McDonald’s Camp Quality
Puppets to visit your school and speak with the
children about cancer.
Cancer Treatment
Supporting High
School Students
• Contact Ronald McDonald House Charities for
a EDMed Professional Development session on
chronic illness to be delivered to your school staff.
What is Fatigue?
For Teachers
& Schools
Extras
Make Modifications
• Structure the child’s return and reintegration into school in consultation
with the child, parents and staff.
• Modify classroom workloads if necessary.
• Modify homework.
• Be aware of any restrictions which may need to be placed on any physical
activities.
• Re-arrange classroom and activity spaces if required.
• Allow the child to wear a cap, scarf or beanie on his/her head if hair loss has
occurred.
• Present material in smaller more manageable steps
Infectious Illness
Letter
Primary school staff provide a very
important role in supporting the
child, their development and their
education.
School Year
Summary
Sibling Support
Letter
• Explore options for additional guided practice from the teacher, teacher
support personnel or via small group or peer tutoring.
• Provide additional demonstration of key information.
• Provide handouts of class notes.
• Provide access to computer assisted learning and accept typewritten
material.
• Allow extra time for class tests.
• Use oral exams.
The school and teachers should
communicate with the child and
family: regularly, openly and warmly.
2
Practical
Issues
Supporting
PreSchool Students
1
Ed Pathways
by Group
3
• Allow for special considerations to be put in place for NAPLAN assessment
e.g.: reading support, extra time including rest breaks, use of a scribe. This
is arranged at the Principal’s discretion in consultation with parents and the
Learning Support Team.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Supporting
PreSchool Students
Supporting Primary
Students
• Treat the child as a student and not a patient.
• Be genuinely welcoming to the returning student remembering
that the child will usually not want to be receiving any form of
preferential treatment.
Cancer in primary
students
Cancer Treatment
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
• Allow time to review and reinforce new facts, concepts, principles
and skills taught, as the child may have difficulty remembering
new information and material.
• Provide the student with a second set of books if necessary to save
them carrying them everyday.
• Be aware that this complex medical condition and treatment
regime may affect a child’s moods, attention and general
behaviour. Make accommodations for these possible changes and
provide guidance as required.
• Arrange the classroom to assist with any physical needs.
• Make up an activity box that the parents can take to the child
at home or in hospital. This may include grade appropriate
workbooks, simple maths items such as a clock face, puzzles, a
calculator, books or art and craft items. Arrange to change the
box contents regularly.
• Provide extra time for getting to different activities such as
assemblies or library lessons.
• Seat the child near a positive role model.
• Provide rest breaks if needed – maybe have a big cushion in the
corner of the classroom.
• Be aware of any siblings who may be in your school, they also
require support and understanding.
• Provide structured transition support if a child is about to enter
high school.
School Year
Summary
“WE JUST LIVE EACH
EK
DAY AND EACH WE
AS IT COMES NOW.”
Sibling Support
Letter
1
2
3
This information has been adapted and extended from content first published in EDMed: Ronald
McDonald Learning Program Education Medical Guidelines (2009) Ronald McDonald House
Charities Australia.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Supporting High
School Students
Cancer in high school
students
Cancer Treatment
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
SUPPORTING HIGH SCHOOL STUDENTS
Cancer in High School Students
The high school years are a period of many changes and challenges:
mentally, socially, emotionally and physically. Extended absences from
school due to cancer treatment during this time can be a major issue.
Research has shown that the maintenance of peer relationships and
the opportunity for ongoing schooling activities provide a supportive
or buffering effect, preventing other long term adjustment issues for
children with cancer.
A student who is diagnosed with cancer during the high school years
should have their academic progress monitored and possibly supported
right throughout high school. It is well recognised through medical and
educational research that a student who has received treatment for cancer
may experience a range of long term treatment effects which may impact
on their education.
Cancer is when some of the body’s cells become faulty, grow
uncontrollably and multiply. They invade and damage surrounding
tissues and may extend (metastasise) to other parts of the body.
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
In Australia there are approximately 1170 children, adolescents and
young adults diagnosed with cancer each year. Approximately 80%
of children and adolescents diagnosed with cancer will be survivors.
The incidence of cancer in early adolescence is more than in the
middle childhood period but still less than the levels of incidence in
early childhood or in late adolescence. For children who do develop
cancers in early adolescence, the most common cancer types in order
of occurrence are: leukaemias, lymphomas, cancers in the bone or
cartilage and cancers of the brain and central nervous system.
Fortunately advances in medical treatments are keeping more children
diagnosed with cancer alive. These children and young people require
structured support from schools and the community to keep them
engaged in learning and involved with their friends.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Supporting High
School Students
students
Cancer Treatment
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
1
2
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
Cancer Treatment
Childhood and adolescent cancers usually result in long periods of
hospitalisation and many years of follow up. While there are particular
treatment protocols based on cancer type; cancer treatment, duration
and the response to treatment can be different for each child.
•
•
•
•
surgery
radiotherapy (This may involve the brain and spinal cord)
chemotherapy
bone marrow transplant
These treatments may be given in combination. Extended treatment
regimens may include the insertion of central venous (into the vein)
access devices to assist with the administration of drugs.
Treatment is provided to children at major specialist hospitals and many
families will need to travel long distances. This can provide additional
stress and financial strain on the family especially when treatment can
continue for several years. Families from country regions will often stay
at places such as a Ronald McDonald House while their child undergoes
treatment.
For some cancers and most commonly for Acute Lymphoblastic
Leukaemia, (ALL) children may receive intensive chemotherapy for
a period of weeks or months before commencing what is commonly
referred to as maintenance chemotherapy which may continue for
a period of months to years. For example: ALL is often treated with
6-8 months of intensive chemotherapy followed by 18 months of
While an adolescent is experiencing intensive chemotherapy treatment
they are unlikely to be well enough to attend school. This is the period
when short term side effects will be most intensively experienced. By
the time that they either complete treatment or commence maintenance
chemotherapy they will spend less time in hospital and more time
at home. They may also experience longer periods of feeling well.
Adolescents often start to return to some of their previous activities
such as school or social activities during this period, however, many
will experience side effects from treatment.
During and after treatment children and adolescents can experience a
range of short term and long term difficulties.
Short term cancer treatment effects may include:
• abnormal hormonal function that may affect puberty and growth
patterns
certain drugs
• vision problems
• seizures
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Supporting High
School Students
students
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
• heart problems – including reduced heart function resulting in shortness of
breath, chest pain or palpitations, and reduced tolerance for exercise.
• changes in the time it takes to process information and complete tasks
• ongoing fatigue
Cancer Treatment
• learning difficulties in literacy and numeracy
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
1
2
For Teachers
& Schools
• difficulty with fine motor skills such as handwriting
• difficulty with planning, organising materials or solving abstract problems
which is referred to as executive functioning problems.
The possibility of learning difficulties emerging in the years following treatment
for cancer is a growing area of concern. Increased attention nationally and
internationally is resulting in oncologists, educationalists, psychologists and
other specialists working together to better understand how to minimise the long
term effects of treatment with improved outcomes for the child and family.
Extras
WHAT ABOUT SCHOOL?
Home
Intro/Start
Ed Pathways
by Group
How can high school staff support a student with cancer?
Supporting Primary
Students
There are many ways in which teachers can help a student and their
family. Strategies may range from a supportive phone call to accessing
further assessments and support if concerns are evident. Always
discuss proposed support strategies with the student and parents and
monitor the outcomes.
Supporting High
School Students
students
recently reviewed Disability Standards for Education 2005, school
staff where the student is enrolled have a responsibility to assist with
the ongoing education of a young person with cancer. Examples
Cancer Treatment
What is Fatigue?
Infectious Illness
Letter
Specific Strategies may include:
Communication
• Respect that the parents know their own child best.
School Year
Summary
• Arrange for a central contact person from your school. This saves
Sibling Support
Letter
2
Cancer
Information
Practical
Issues
For Teachers
& Schools
Extras
Supporting
PreSchool Students
1
Educational
Pathways
• With parental permission ensure the contact person passes on all
necessary information to every teacher who is working with the
student.
3
• Ensure families at the school are aware of the need to inform the
school if their child has an infectious illness such as; measles or
chicken pox. Cancer drugs can impair the adolescent’s ability to
combat infection, leaving them open to viral infections. Measles
or chicken pox could have fatal consequences. If there is a
measles or chicken pox epidemic occurring at the school, the
family will need to be informed and the student should be kept
home for a period of time according to medical protocols.
• Be proactive in maintaining communication with the family
while the student is receiving treatment and possibly absent from
school.
• Ensure student and parent access to school websites, intranets,
portals and any applicable educational websites. Check that they
have any required passwords.
• Arrange for peers in the student’s classes to prepare letters,
stories, photos or art to send to the student.
• With parental permission arrange for a phone, video, Skype or
Webcam link from the school to the student who is away. This
keeps them involved in classroom learning and activities.
• With parental permission enable email or internet
communication with the student. This can assist with both
learning and friendship contacts.
• Stay informed of medical treatments the student is undergoing.
The effects of medication may impact upon the student’s
academic performance and behaviour.
• Conduct a Learning Support Team Meeting to discuss
opportunities for ongoing learning and peer contact while the
student is absent, returning to school and in the years following
treatment.
• In consultation with the parents and the student ask the school
counsellor/guidance officer to monitor and support the student’s
academic and emotional progress.
• Ensure academic and or psychometric assessments are available
if necessary.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Supporting Primary
Students
Supporting High
School Students
students
Extras
• If the student has missed a significant amount of schooling they
may be eligible for the Ronald McDonald Learning Program which
provides a catch up program in the form of individual tutoring by
a qualified teacher.
• Provide handouts of class notes.
• Discuss with the parents the suitability of arranging for the Camp
Quality High School Performance to visit your school and speak
with students about cancer.
• Use oral, open book or take home tests when you can.
• Contact Ronald McDonald House Charities for an EDMed
Professional Development session on chronic illness to be
delivered to your school staff.
Cancer Treatment
Make Modifications
What is Fatigue?
• Structure the student’s return and reintegration into school in
consultation with the student, parents and staff.
Infectious Illness
Letter
• Modify classroom and assessment workloads if necessary.
• Modify homework.
School Year
Summary
• Be aware of restrictions which may need to be placed on physical
activities.
Sibling Support
Letter
• Arrange the classroom to assist with any physical needs.
• Seat the child near a positive role model.
• Allow the student to wear a cap, scarf or beanie on his/her head if
hair loss has occurred.
• Present material in smaller more manageable steps.
• Explore options for additional guided practice from a specific
subject teacher, teacher support personnel or via small group or
peer tutoring.
2
For Teachers
& Schools
Supporting
PreSchool Students
1
Practical
Issues
3
• Provide additional demonstration of key information.
• Provide access to computer assisted learning and accept
typewritten material.
• Allow extra time for class tests.
• Allow for special considerations to be put in place for NAPLAN
assessment e.g.: reading support, extra time including rest breaks,
use of a scribe. This is arranged through the school principal.
Arrange this early in the school year.
• Allow for special considerations to be put in place for senior
exams. e.g.: reading support, extra time including rest breaks in
order to manage fatigue and concentration issues, use of a scribe.
Specific forms and assessments are required for this assistance.
They are available from the school counsellor/guidance officer
and should be completed as soon as possible.
• Treat the child as a student and not a patient.
• Be genuinely welcoming to the returning student, remembering
that the adolescent will usually not want to be seen to be receiving
any form of preferential treatment.
• Make up a box of materials for the student while they are at home
or in hospital. This may include grade appropriate workbooks,
class novels, simple maths items such as a calculator or protractor,
books or art and craft items. Arrange to change the contents
regularly.
• Allow time to review and reinforce new facts, concepts, principles
and skills taught, as the student may have difficulty remembering
new information and material.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Supporting Primary
Students
Ed Pathways
by Group
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Supporting High
School Students
students
Cancer Treatment
What is Fatigue?
Practical
Issues
For Teachers
& Schools
Extras
• Provide the student with a second set of books if necessary to save them
carrying them everyday.
• Provide structured study skills training.
• Encourage peers to stay in contact with the student. This can be done via a
large range of technology options e.g.: mobile phones, Facebook, email etc.
• Provide rest breaks if needed.
• Provide the student with a ‘time out’ or ‘rest break’ card that they can use if
they need to be excused for short periods for medication or fatigue needs.
• Provide extra time for getting to different classes or activities such as
assemblies or library lessons.
• Be aware of any siblings who may be in your school. They also require
support and understanding.
• Provide structured transition support for the student as they move into the
senior school years.
Infectious Illness
Letter
• Arrange for a career advisor to work with the student if they are in their
senior years. They may be able to provide further guidance and information
about:
School Year
Summary
oEmployment choices
oTAFE courses
oApprenticeships
oUniversity Educational Access Schemes & Special
Considerations
Sibling Support
Letter
2
Cancer
Information
Supporting
PreSchool Students
1
Educational
Pathways
3
This information has been adapted and extended from content first published in EDMed: Ronald McDonald
Learning Program Education Medical Guidelines (2009) Ronald McDonald House Charities Australia.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
Supporting Primary
Students
Supporting High
School Students
What is Fatigue?
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
WHAT IS FATIGUE?
Fatigue is much more than just being tired. The information below
describes what parents and teachers may see and how they can assist
a student who is experiencing fatigue. This information has been
primarily drawn from the excellent book published in England titled:
Pupils with Cancer, a Guide for Teachers (see Chapter 6 – Resources
and References).
The tiredness felt by a student who has been treated for cancer can be
very debilitating and it is often combined with general aches, feeling
drowsy and being low in spirits. Students may experience mental or
physical fatigue or both, which can affect everything they do. Mental or
cognitive fatigue is often less obvious than physical fatigue. They may
be unable to attend school full time, for a full day or be able to complete
class assessment tasks or homework at the end of a school day.
Fatigue can make learning more difficult for the student, affecting both
their memory and their ability to concentrate. Tasks which previously
involved little effort may now seem exhausting to the student.
What might I see in the student?
• They may say they feel tired or use words such as ‘fuzzy’ or
‘confused’.
• School work may take longer to complete.
• Apathetic or what looks like ‘lazy’ behaviour may be noted.
• Slurred speech or complaints of blurred vision may occur.
• Yawning.
• H
olding their head in their hand and/or leaning into their desk
space.
• Difficulty with getting from class to class on time and arriving
late.
• Not interacting with peers.
• Poor concentration, easily distracted or having trouble
remembering things.
• Irritability or low mood.
Strategies for teachers
• In discussion with the student, reduce expectations of homework
and class work.
• Help the student to prioritise work.
• Allow the student to leave class a few minutes earlier in order to
get them sorted for the next class.
• Modify time limits in tests.
• Don’t insist on handwritten work if it is easier for the student to
use a computer.
• Provide handouts of your class notes to save the student from
having to listen and take notes at the same time.
• Provide the student with a ‘time out’ card so they can take a break,
have a drink or even put their head on their desk for while. This
helps them to just show the card rather than interrupting the
whole class.
• Encourage others students to have understanding and support for
the student.
• Be positive and encouraging of the student.
• Ask them how they feel?
• Take the time to listen.
• Assist the student to consider seeking special considerations or
exam support if required.
WHAT ABOUT SCHOOL?
Home
Supporting
PreSchool Students
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Students
Intro/Start
Educational
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Cancer
Information
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by Group
Practical
Issues
For Teachers
& Schools
Extras
INFECTIOUS ILLNESS LETTER
Infectious Illness Letter
Supporting High
School Students
< TAP DOCUMENT
What is Fatigue?
to customise this letter and print onto
school letterhead.
<Print on School Letterhead>
<Date>
Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Dear Parent/Guardian,
We wish to advise you that a student in our school community is currently receiving medical treatment for
cancer. This student will be attending school on occasion while recovering from/undergoing treatment.
As a consequence of treatment, this student’s ongoing health is at risk if he/she comes into contact with
infectious illnesses, in particular: chicken pox, measles or mumps. If your son or daughter is suspected of having
one of these illnesses it is very important that he/she does not attend school. It is also important that while
your child is unwell he/she remains at home until he/she is no longer contagious. Information on infectious
conditions can be found on national health websites e.g.: www.health.gov.au or alternatively contact your local
GP.
If your child has chicken pox, measles or mumps or is suspected of having an illness please contact the school
immediately. This will allow the school to assess the probable contact and therefore exposure of our student to
the disease. Notification can then be given to the parents and medical specialists.
As a school community we value your support in relation to the well being of all of our students. Please do not
hesitate to contact name if you have any questions.
Yours sincerely,
Name
Position
PRINT
Source: EDMed: Ronald McDonald Learning Program Education Medical Guidelines (2009) Ronald McDonald House Charities Australia
Source: EDMed: Ronald McDonald Learning Program Education Medical Guidelines (2009) Ronald
McDonald House Charities Australia
WHAT ABOUT SCHOOL?
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Students
Supporting High
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Intro/Start
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Information
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Infectious Illness
Letter
School Year
Summary
Sibling Support
Letter
Extras
SCHOOL YEAR SUMMARY
School Summary Page
Student name:
Student's
Photo
Date of Birth:
Grade:
< TAP DOCUMENT
School:
What is Fatigue?
For Teachers
& Schools
Parent/Carer Names:
to fill in this form and /or print.
Medical Condition:
Date of Diagnosis:
Treating Hospital:
School Contact Person:
Hospital Contact Person:
Class Teacher/Homeroom Teacher for current school year:
If Secondary - subjects taken:
Days Absent:
Semester 1
Semester 2
Student’s medical condition has impacted on their attendance this year?
Yes
No
Student’s medical condition has impacted on their educational progress this year?
Yes
No
Relevant educational issues or areas of concern:
Relevant social/emotional issues or areas of concern:
Student Strengths:
Areas that require monitoring or assistance for the next school year:
Completed by: (Parent and/or Teacher name)
PRINT
WHAT ABOUT SCHOOL?
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Supporting
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Students
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Intro/Start
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Information
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Practical
Issues
Sibling Support Letter
Dear Teachers
< TAP DOCUMENT
What is Fatigue?
Infectious Illness
Letter
From time to time it is likely that (name) will experience stress and worry as a direct result of
(his / her) (brother’s/ sister’s) serious medical condition which require extensive medical
treatment.
Sibling Support
Letter
Extras
SIBLING SUPPORT LETTER
Re:
(Name of sibling)
(Year/Grade)
I wish to inform you that (name) has a brother / sister who is currently being treated for (name)
of illness.
School Year
Summary
For Teachers
& Schools
I would appreciate it if you could support our family through this difficult time by keeping an
eye on (name) over the coming weeks and months. It may be useful for (him / her) to talk about
how he / she is feeling about (his/ her) (brother’s / sister’s illness) with an adult (he / she) trusts
in the school community.
Our family routine will be quite disrupted over the coming months which may lead to (name)
having incomplete homework, missing books, incorrect uniform etc. In addition (he / she) may
experience lack of sleep or anxiety which will impact on (his/ her) attention. Your consideration
for these issues would be appreciated.
If you have any concerns regarding (name’s) emotional, social or academic welfare please
contact me as soon as possible.
Thank you for your understanding.
Yours sincerely
PRINT
Amended document from: Pupils with cancer, a guide for teachers. (See Chapter 6 Resources and References)
to customise this letter and /or print.
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WEBSITES
Websites
Education &
Employment
Counselling
Australian Organisation
& Services
Worldwide
Organisations & Services
References
Glossary
Education & Employment
Australian Apprenticeships
www.australianapprenticeships.gov.au
NAPLAN Website - National Assessment Program –
Literacy and Numeracy
www.naplan.edu.au
Australian Curriculum Assessment and Reporting
Authority
www.acara.edu.au
TAFE - Technical and Further Education
State and Territory based sites
Disability Standards Australia
www.ddaedustandards.info
Education Departments
State and Territory based sites
Employment and Workplace Relations Services for
Australians
www.workplace.gov.au
RMHC Charlie Bell Scholarship
www.rmhc.org.au
Ronald McDonald Learning Program
www.rmhc.org.au
University Admission Centre
www.uac.edu.au
WHAT ABOUT SCHOOL?
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Intro/Start
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Cancer
Information
Ed Pathways
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For Teachers
& Schools
Extras
WEBSITES
Websites
Education &
Employment
Counselling
& Services
Worldwide
References
Glossary
Counselling
Australian Centre for Grief and Bereavement
www.grief.org.au
Australian Psychological Society
Find a psychologist near you
Ph: 1800 333 497
www.psychology.org.au
Beyond Blue
Support and information for depression
Ph: 1300 22 4636
www.beyondblue.org.au
KidsMatter - Australian Primary School and Early
Childhood Mental Health Initiative
www.kidsmatter.edu.au
Life Line
Ph: 13 11 14
www.lifeline.org.au
MindMatters - Australian Secondary School Mental Health
Initiative
www.mindmatters.edu.au
Parent Line
Ph: 1300 1300 52
www.parentline.org.au
Relationships Australia
Ph: 1300 364 277
www.relationships.com.au
WHAT ABOUT SCHOOL?
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Information
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WEBSITES
Websites
Education &
Employment
Counselling
& Services
Worldwide
References
Glossary
Australian Organisations & Services
Australian Human Rights Commission
www.hreoc.gov.au
Camp Quality
www.campquality.org.au
Cancer Council Helpline
Ph: 13 11 20
www.cancercouncil.com.au
www.cancersupportonline.com.au
Cancer Institute of NSW
www.cancerinstitute.org.au
Department of Health and Ageing
www.health.gov.au
Legal - National Children’s and Youth Law Centre
www.lawstuff.org.au
Livewire - Online Support
www.livewire.org.au
Make-a-Wish Foundation
www.makeawish.org.au
Missing School - Keeping seriously sick kids connected
www.missingschool.org.au
CanTeen
www.canteen.org.au
RedKite
www.redkite.org.au
Carers Australia
www.carersaustralia.com.au
Ronald McDonald House Charities
www.rmhc.org.au
Centrelink
www.centrelink.gov.au
Siblings Australia
www.siblingsaustralia.org.au
Country Hope - Assistance for country families
www.countryhope.com.au
Starlight Children’s Foundation
www.starlight.org.au
Department of Human Services (formerly Centrelink)
www.humanservices.gov.au
Variety the Children’s Charity
www.varietynsw.com.au
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WEBSITES
Websites
Education &
Employment
Counselling
& Services
Worldwide
References
Glossary
Worldwide Organisations & Services
American Childhood Cancer Organization (Formerly
Candlelighters Childhood Cancer Foundation)
www.acco.org
Children’s Oncology Group
www.curesearch.org
Fertility
www.myoncofertility.org
I’m Too Young For This! Cancer Foundation For Young
Adults
http://i2y.com
International Confederation of Childhood Cancer Parent
Organisations (ICCCPO)
www.icccpo.org
International Psycho-Oncology Society
www.ipos-society.org
Leukemia & Lymphoma Society
www.leukemia-lymphoma.org
Pupils with cancer, a guide for teachers
www.royalmarsden.nhs.uk/teachersguide
Sibling support
www.supersibs.org
The Association of Cancer Online Resources, Inc
www.acor.org
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REFERENCES
Websites
References
Glossary
American Cancer Society (n.d.). Cancer Reference Information.
Children Diagnosed with Cancer: Dealing with Diagnosis.
Retrieved 2008 from www.cancer.org
Butler, R. W., & Mulhearn, R. K. (2005). Neurocognitive
Interventions for Children and Adolescents Surviving Cancer.
Journal of Pediatric Psychology 30 (1) pp. 65-78.
Armstrong, D. (2008). Advocating for Your Child’s Learning
Needs: Through Treatment and Beyond. Telephone Education
Program. Retrieved 2008 from www.leukemia-lymphoma.org
Cancer Council Queensland (n.d.) Understanding Childhood
Cancer: A handbook for all teachers. Queensland: Cancer Council
Armstrong, F. D., & Reaman, G. H. (2005) Psychological
Research in Childhood Cancer: The Children’s Oncology Group
Perspective. Journal of Pediatric Psychology 30(1) pp. 89-97.
Australian Government (1992) Disability Discrimination Act 1992
available at www.austlii.edu.au
Australian Government Department of Education, Employment
and Workplace Relations (2005) Disability Discrimination
Act - Education Standards. Australian Government. www.
ddaedustandards.info
Australian Institute of Health and Welfare. Australian
Government. Retrieved 2009 from www.aihw.gov.au
Broyd, B. P., Pritchard-Jones, K. & Edwards, L. (2008). Pupils
with cancer, a guide for teachers. The Royal Marsden NHS
Foundation Trust and the Specialist Schools and Academies Trust.
England, U.K. – Also available as a downloadable PDF from www.
royalmarsden.nhs.uk/teachersguide
1
2
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Children’s Oncology Group (2006). Health Link – Educational
Issues Following Treatment for Childhood Cancer. Educational
Issues V 2.0 – 3/06 retrieved 2008 from www.curesearch.org
Donnan, B.M. & Webster T. (2011) What about school? A resource
for parents of children, adolescents and young adults with cancer.
Ronald McDonald House Charities Australia.
Donnan, B.M., Webster, T., Marshall, G., Dalla Pozza, L., Alvaro,
F., Lavoipierre, J., Medlock, P. & Lawther, D. ( 2010). Educational
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Gerhardt, C.A., Dixon, M., Miller, K., Vannatta, K., Valerius, K.S.,
Correll, J., et al. (2007). Educational and Occupational Outcomes
Among Survivors of Childhood Cancer During the Transition to
Emerging Adulthood. Journal of Developmental and Behavioral
Pediatrics 28: pp. 448–455.
Keene, N (Ed.). (2003). Educating The Child With Cancer: A
Guide for Parents and Teachers. United States of America:
Candlelighters Childhood Cancer Foundation.
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REFERENCES
Websites
Keene, N., Hobbie, W., & Ruccione, K. (2000). Childhood cancer
survivors - A practical guide to your future. United States of
America: O’Reilly and Assoc.
References
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Kreitler, S. & Arush, M. W. B. (Ed.). (2004). Psychosocial Aspects of
Pediatric Oncology. England: John Wiley & Sons, Ltd.
Kupst, M.J., Natta, M.B., Richardson, C.C., Schulman, J.L., Lavigne,
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Leukemia & Lymphoma Society (2005). Learning & Living With
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McDevitt, T. M. & Ormrod J.E. (2004). Child Development:
Educating and Working with Children and Adolescents (2nd ed.).
New Jersey: Pearson Education Inc.
McDevitt, T. M. & Ormrod J.E. (2010). Child Development and
Education (4th ed.). New Jersey: Pearson Education Inc.
McGrath, P. & Phillips E. ( 2008). Beginning treatment for Acute
Lymphoblastic Leukaemia: Schooling Issues. International
Program of Psycho-Social Health Research – Occasional Paper
Series. 1;2
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McDonald, K. (2007). The effects of cancer treatment on school
aged children. (PPT presented at Ronald McDonald Learning
Program Teacher Day.) Newcastle. The John Hunter Children’s
Hospital.
Morgan, A. (2007). Educational Challenges After Treatment:
Middle School through College. Telephone Education Program.
Retrieved 2008 from www.leukemia-lymphoma.org
Nathan, P. C., Patel, S. K., Dilley, K., Goldsby, R., Harvey, J.,
Jacobsen, C., et al. (2007). Guidelines for Identification of,
Advocacy for and Intervention in Neurocognitive Problems in
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Onconurse.com. (n.d.). Childhood cancer and school. Retrieved
2010 from www.patientcentres.com
Online Dictionary – accessed 2010 - www.dictionary.reference.com
Paterson, P. Millar, B. & Desille, N. (2008). The Needs of Young
People Who Have or Have Had Cancer – Report on the CanTeen
National Member Survey for Patient Members Sydney: CanTeen.
Reber, A. S. & Reber, E. (2001). The Penguin Dictionary of
Psychology (3rd ed.) London: Penguin Group.
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Information
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REFERENCES
Websites
Ronald McDonald House Charities. (2009). EDMed Ronald
McDonald Learning Program Education Medical Guidelines.
Sydney: Ronald McDonald House Charities.
References
Glossary
Shiu, S. (2004). Positive interventions for children with chronic
illness: Parents’ and teachers’ concerns and recommendations.
Australian Journal of Education, Vol. 48, (3) pp. 239-252.
Spinetta, J.J. (1998). The Parent of the child with cancer:
coping strategies. Lecture presented at the 30th Meeting of the
International Society of Pediatric Oncology (SIOP). Yokohama,
Japan.
Spinetta, J. J. (2007). Coping strategies. Children’s Cancer and
Leukemia Group. Contact Magazine, Issue 37.
The Children’s Cancer Centre. The Royal Children’s Hospital
Melbourne. Accessed 2009 from www.rch.org.au/ccc
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The National Children’s Cancer Society. (n.d.). The
Mountain You’ve Climbed. A Parent’s Guide to Childhood
Cancer Survivorship. Retrieved 2009 from www.
nationalchildrenscancersociety.org
Wakefield, C. E., McLoone, J., Goodenough, B., Lenthen, K., Cairns,
D.R. & Cohn, R. J. (2010). The psychosocial impact of completing
childhood cancer treatment: A systematic review of the literature.
Journal of Pediatric Psychology. Vol.35(3) pp. 262-274.
Weiner, L. S. & Pao, M. (Ed.). (2009). Quick Reference for
Pediatric Oncology Clinicians: The Psychiatric and Psychological
Dimensions of Pediatric Cancer Symptom Management.
Charlottesville, VA: IPOS Press.
Wuellner, L. (2008). Cancer in the School Community. New South
Wales: The Cancer Council.
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GLOSSARY
Websites
ALL – acute lymphoblastic leukaemia - a cancer of the lymphoid cells in
the bone marrow and the lymphoid organs of the body
References
Allogeneic bone marrow transplant - the transplant of stem cells from a
donor other than an identical twin. The most common and most suitable
donor is usually a brother or sister of the patient.
Glossary
AML – acute myeloid leukaemia – (also called acute myeloid leukaemia,
acute nonlymphatic leukaemia or ANLL) is cancer of the myeloid blood
cells which are produced in the bone marrow and which help fight
bacterial infections
Autologous bone marrow transplant – the collection of the patient’s own
stem cells, either by harvesting bone marrow or peripheral blood stem
cells. These cells are then frozen and stored before being reinfused or
given back to the patient after high doses of chemotherapy.
AYA – adolescent young adult – usually referring to the ages of 12-24
years
Biopsy – the surgical removal of a small piece of tissue for identification
and diagnosis of illness, most commonly of cancer
BMT - bone marrow transplant - a procedure carried out to replace
defective bone marrow stem cells with healthy cells
Cancer – a group of diseases characterised by uncontrolled
multiplication and spread of abnormal cells
Central line – a line inserted into a large vein to administer medicines or
withdraw blood
1
2
3
Chemotherapy – the use of special (cytotoxic) drugs to treat cancer by
killing off cancer cells or slowing the spread of the cells
Cognition – a broad term used to refer to activities such as thinking,
reasoning, knowledge and problem solving
Cognitive development – the growth of the skills of cognition over time
Cognitive functioning – how an individual uses and applies the skills of
cognition
Cognitive late effects – changes to cognition which may occur following
some cancer treatments. Late effects refer to changes which are usually
seen some time after treatment rather than during treatment. These
effects may be observed months or even years later when the individual
is faced with new learning and cognitive challenges.
Executive functioning – the ability of a child to regulate his/her
behaviour through working memory, the control of emotions, inner
speech, analysis of problems, focus and concentration, staying on task,
switching between tasks, and being aware of communication with others.
Explicitly – directly and clearly
Fatigue – a reduced capacity to perform often combined with general
aches, feeling drowsy and being low in spirits. Fatigue may be mental or
physical or both.
Fine motor skills – the use and development of small muscle groups in
the body such as fingers
Gross motor skills – the use and development of large muscles groups in
the body such as the legs
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
GLOSSARY
Websites
References
Infectious illnesses – illnesses which can be spread from one person to
another or from one part of the body to another
Metastasis – the process by which cancer spreads from the place at
which it first arose as a primary tumour to distant locations in the body
Glossary
Isolation – within cancer treatment refers to the patient being kept away
from others in order to minimise the chances of infectious illnesses.
Modelling – providing a demonstration of a particular behaviour
Late effects – late effects refer to changes which are usually seen some
time after treatment rather than during treatment
Learning disabilities – a neurological disorder: a child with a learning
disability may have difficulty reading, writing, spelling, reasoning,
recalling and/or organising information
Learning Support Team (LST) – a team brought together to support a
student consisting of Parents/Caregivers, School Principals, Teacher/
Support Teacher, School counsellor/guidance officer, medical specialist
personnel and other advisors e.g.: special education teachers or itinerant
teachers
Leukaemia – cancer of the bone marrow and blood
Long term follow up (LTFU) – medical and psycho social care following
cancer treatment often commencing 5 years post treatment
Long term memory – the ability to store information and recall it long
into the future.
Long term treatment effects – see late effects
1
2
3
Memory – a broad term referring to the mental function of retaining
information from the world around us and then recalling or using this
information
Neural connections – the map of connections between the brain cells
called neurons.
Neurons – nerve cells that send and receive electrical signals over long
distances within the body
Neuropsychologist – a specialist who examines the effects of the brain
and any possible changes as these relate to abilities, behaviour and
functioning
Occupational therapist – a specialist who looks at the relationship
between the individual, their occupational roles (this includes the tasks
they need to perform in self-care, play, school or work) and an array
of external or environmental factors. The therapist works to help the
indivdial overcome or learn to manage any problems.
Oncologist – a doctor who specialises in cancers and tumours.
Oncology – the study and treatment of cancer.
Physiotherapist – Physiotherapists assist people with physical
movement or pain problems using exercise, hydrotherapy, massage etc.
Pre reading skills – early learning skills which help to prepare the child
for learning to read. This can include exposure to books, words, stories,
signs etc.
WHAT ABOUT SCHOOL?
Home
Intro/Start
Educational
Pathways
Cancer
Information
Ed Pathways
by Group
Practical
Issues
For Teachers
& Schools
Extras
GLOSSARY
Websites
References
Glossary
Port-a-cath (also port) – a small medical device that is placed beneath
the skin to provide access to the veins for medical procedures
Somnolence – a state of near sleep, a strong desire for sleep, or sleeping
for unusually long periods
Post traumatic stress disorder (PTSD) – an anxiety disorder that
emerges following a psychologically distressing or traumatic event
Speech pathologist – a specialist who helps with problems associated
with communication i.e.: speech, using and understanding language,
voice, fluency, hearing, or swallowing food and drink
Post traumatic growth (PTG) – positive psychological changes that may
emerge as a result of dealing with very difficult life events.
Prosthetic – an artificial device used in addition to or to replace a body
part
Psychologist – a person trained and educated to perform psychological
(relating to mind and behaviour) research, testing, and therapy.
Psychosocial – a broad term used to describe the interaction of
psychological and social factors
Radiation therapy – radiation therapy is the systematic delivery of highenergy x-rays to kill or damage rapidly growing cells, such as cancer cells
Self-concept – the way a child feels about him or her self
Self-esteem – a judgement of self-worth, how well you like who you
perceive yourself to be
Short term memory – the ability to recall information after a short or
brief period of time
Social stories – a story book usually made with pictures or photos to
assist a child to learn about a particular social situation.
1
2
3
Speech therapy – a planned approach to assist with speech and
communication difficulties
Stem cell transplant – stem cell transplant, which includes bone marrow
transplants (BMT) is a procedure carried out to replace defective bone
marrow stem cells with healthy cells
Syngeneic BMT – the transplant of stem cells from one identical twin
to the other. Such a transplant is effectively the same as an autologous
transplant because the donor’s bone marrow is identical to the patient’s.
Transition – the process when a child moves from one setting to another,
for example, from year 6 to high school, or leaving school and moving
into the community, or returning to school after an illness.
Treatment protocols – structured treatment plans drawn from best
practice or recommended approaches
Tumour – a mass of cells growing abnormally. If benign, the tumour cells
remain confined within the tumour, if malignant; the tumour cells are
able to spread to different parts of the body.
Working memory – the description of a memory system which involves
holding some information in mind while a task is solved or ‘worked out’
eg: recalling your phone number and then saying it backwards.

what about school? - Ronald McDonald Learning Program

Transcription

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