When a young person is diagnosed and treated for cancer, both patient and family enter the complex and often frightening world of modern medicine. Hospitals and major medical centers can be vast and confusing places with seemingly endless corridors and multiple buildings.

Hospital rooms can be drab and scary. Many professionals have questions, tests to perform, and information to give. The language can seem foreign and the terms used
unfamiliar. There are endless forms to be completed.

Contact with insurance or managed care providers increases as families check coverage arrangements, seek approval for tests and procedures or question payment for care. The schedules and routines of daily family life are changed to
accommodate a difficult treatment plan. Family members are separated as one parent returns to work and siblings attend school. Parents must yield some control of their child and place their trust in members of a cancer care team.

With time and experience, however, patients and families become familiar with the medical centers and other places where treatment is given. They memorize the route and all the shortcuts from home to the hospital. They master the way to the cafeteria. They find the spots that offer privacy. They bring blankets and pictures from home to brighten rooms. They pack snacks and toys and books for clinic visits.
They learn to navigate the miles of hallways. The staff become real people and some important relationships are formed. Children with cancer and their parents adjust to
their new world and become reluctant experts in childhood cancer.

Here are suggestions to help patients and families begin to understand and adjust to the health care system:

Ask for maps or a tour of the hospital
Have each professional explain the part they play in providing care
Determine exactly where treatment will take place
Make hospital rooms as homey as possible
Have activities on hand for time spent in clinic
Clarify the role of the child's referring doctor
Check on insurance or managed care requirements
Request definitions of unfamiliar terms
Review the written materials provided by the team or available through your American Cancer Society
Ask team members to describe how the "system" works
Talk to other children and parents to see what worked for them

What Is "Comprehensive Care?"

With most illnesses of childhood or adolescence, parents usually can rely on their own knowledge and skills, or those of their pediatrician (a doctor who specializes in the care of children) or family practice doctor, for an accurate diagnosis and for treatment.

Cancer diagnosis and its medical management, however, require the help of medical specialists trained to deal with different treatments. These include surgery, radiation therapy, chemotherapy, bone marrow transplant and immunotherapy. Treating the disease usually involves consultation with additional medical specialists who assist with any complications. Other specialists are also used to help patients and family members address the social, emotional, educational, and spiritual issues that are part of a childhood cancer experience.

Comprehensive care is the term used to describe the approach to care that considers the whole patient and all his or her needs, not just the medical or physical ones. Comprehensive care, using the services of many professionalsworking together, is the standard approach at all major medical centers directing the treatment of young patients with cancer.

The key elements of well-designed comprehensive care are:

Access to state-of-the-art medical diagnosis and treatment, including clinical trials
Use of a team of professionals with expertise and training in childhood cancer
Availability of a wide range of services for all patients and families, including advocacy, education, counseling, support groups, and other special programs to enhance the quality of life
Resources to meet basic needs, such as meals, lodging, transportation
Patient and family educational programs with current written and audiovisual materials
School programs, including school re-entry and contact with
classroom or homebound teachers
Organized efforts to help patients cope effectively with
treatment, tests and procedures
Advocacy programs to address families' financial concerns
about treatment and related costs
Consultation with community health care professionals
Facilities that are patient and family friendly
Use of studies to evaluate the results of all interventions provided.

What Is a Comprehensive Cancer Center?

The National Cancer Institute (NCI) designates certain medical centers as Comprehensive Cancer Centers because they meet certain requirements.

These centers must:

take part in clinical trials
be involved in research connected to clinical service
do basic laboratory research
offer cancer information services
have psychosocial support services available
The NCI also identifies certain hospitals as simply Cancer Centers. These centers also are required to meet NCI standards. Studies have shown that results or outcomes (such as survival rates) are better for children treated at hospitals staffed by child cancer specialists. Most medical centers treating children and adolescents with cancer participate in either of two national clinical trials cooperative groups.

The large organization that includes children's research groups is the Children's Oncology Group (COG.) It includes 4 groups that conduct clinical trials (studies of new
treatments in patients) for children. Strict guidelines are followed by treating institutions to ensure that patients and families are fully informed about the potential value and risk of each clinical trial. After they have received detailed
information about the clinical trial, parents sign a consent form. This is referred to as giving "informed consent." Patients then are randomly assigned (randomized) by
computer to receive one treatment versus another within the clinical trial. Families are free to reject enrolling their child in a clinical trial and can choose to receive the standard treatment, or treatment generally accepted as the best treatment currently available.

Where Do Children and Adolescents Receive Treatment?

The majority of children with cancer are treated at large pediatric cancer centers in clinical trials of the major study group sponsored by the National Cancer Institute (NCI), Children's Oncology Group (COG The groups that make up COG are: the Pediatric Oncology Group, the Children's Cancer Group, the National Wilms' Tumor Study Group, and the Intergroup Rhabdomyosarcoma Study Group. The NCI also
supports Comprehensive Cancer Centers (which meet specific criteria dealing with basic research and patient treatment) and Community Clinical Oncology Centers. There are several medical institutions that are members of the COG in the
United States and abroad that treat pediatric cancer patients. Research has shown that children and adolescents with cancer, who are treated at pediatric cancer centers, ultimately have a better outcome and improved survival.

As inpatients, children and adolescents are treated on inpatient units in medical centers or in community hospitals. Outpatient treatment takes place in hospital clinics, doctor's offices, or at home. When they are treated at home, patients often receive services from a home health agency. These services can include teaching, checking weight and vital signs, giving chemotherapy or medicines by vein, and other types of nursing care. Pediatricians or family practice doctors may be involved in giving chemotherapy or in evaluating and treating symptoms, with guidance from the pediatric oncologist who is managing treatment. Long hospitalization is avoided whenever possible. Every effort is made to have children attend school and engage in their normal activities as much as possible.

Who Makes up the Comprehensive Health Care Team?

Many professionals of different disciplines (from medicine, nursing, social work, and others) are part of the cancer care team available to help patients and families. They may be involved from the days before diagnosis through the months and years following the end of treatment. They offer many different services and programs. Team members work together to determine what is needed by each patient and
his or her family to treat and deal with the cancer and its treatment most effectively. They determine needs, plan, and coordinate individualized care. During hospitalization, patients and families will see some team members every day
and others only when help is needed with particular issues. During clinic visits the same or different team members may be available. When patients are at home, team members generally stay in contact and provide help by telephone or arrange community care.

Every treatment center is unique, so teams will consist of different members in different settings. In the time just before or after diagnosis, parents are usually given information about, or introduced to, all members of the cancer care team. All teams have doctors, nurses and social workers. Teams may also include psychologists or psychiatrists, recreation therapists or child life workers, teachers, and chaplains. Most teams consider parents as team members and want them to have an active role in caring for their child. Children and adolescents, depending on age and development, also are team players.

Team doctors in medical centers, children's hospitals or community hospitals involved in caring for children and adolescents with cancer can be:

pediatric oncologist: a doctor who specializes in cancers of children
They generally are board-certified (have passed written national exams). In teaching hospitals they serve as "the doctor in charge," usually on a rotating basis, since they have teaching and research responsibilities. They plan and direct cancer treatment.
pediatric hematologist: A doctor who specializes in diseases of the blood and blood-forming tissues of children.
pediatric hematology/oncology fellows. These are pediatricians training to become hematologists or oncologists.
pediatric residents. These are doctors training to become
pediatricians. They are in teaching hospitals, usually doing a
rotation on the hematology or oncology service.
medical students. Although not yet doctors, third and fourth
year medical students in teaching hospitals are assigned
monthly rotations on the hematology or oncology services and
help care for patients.
Other doctors in the medical center and its clinics may play a
part in caring for the child or adolescent with cancer,
depending on the diagnosis, treatment plan, or symptoms that
develop during the course of treatment. All work closely with
the basic cancer care team to coordinate care.

radiation therapists: people with special training to work the equipment that delivers radiation therapy.
radiologists: doctors with special training in diagnosing diseases by reading x-rays and other types of imaging studies, for example, CT scans and magnetic resonance
imaging (MRI).
pediatric surgeons: doctors who perform surgery to treat medical problems.
thoracic surgeons: doctors who performs surgery to the chest cavity.
neurosurgeons: doctors specializing in operations to treat nervous system disorders.
neurologists: doctors who treat the problems of the nervous system.
ophthalmologists: medical doctors who specialize in diseases of the eye.
orthopedic surgeons: surgeons who specialize in diseases and injuries of the bones.
pathologists: doctor who specializes in the diagnosis and classification of diseases by laboratory tests such as examination of tissue and cells under a microscope. The
pathologist determines whether a tumor is benign or cancerous, and, if cancerous, the exact cell type and grade.
psychiatrists: medical doctors specializing in mental health and behavioral disorders. Psychiatrists provide counseling and can also prescribe medications.
urologists: doctors who specialize in treating problems of the
urinary tract in men and women, and of the genital area in men.
endocrinologists: doctors who specialize in diseases related to the glands of the endocrine system, e.g., the thyroid, pancreas, and adrenal glands.
gynecologists: doctors who specialize in women's health.
anesthesiologists: doctors who specialize in giving medicines
or other agents that prevent or relieve pain, especially during surgery.

Important services are also provided by:

pharmacologists: These are professionals trained in
understanding the properties and uses of medications. They
provide consultation about the uses, reactions and
interactions of drugs used for treatment and symptom
management.
dietitians: an expert in the area of food and diet; a
registered dietitian (RD) has at least a bachelor's degree
and has passed a national exam.
Nurses, like physicians, have different roles and titles based
on their education and training. Those who specialize in
working with pediatric cancer patients may have passed an
exam given by the Association of Pediatric Oncology Nurses
to earn the designation of Certified Pediatric Oncology
Nurse (CPON). Nurses assist doctors in the care and
treatment of children and adolescents with cancer. They play
an important part in educating the patient and family about
cancer and its physical effects. They also facilitate the care
of the patient in his or her home community when referrals
are made to home health agencies.

Many teams include:

Oncology clinical nurse specialists: registered nurses with a
master's degree in oncology nursing who specializes in the
care of cancer patients. Oncology nurse specialists may
prepare and administer treatments, monitor patients,
prescribe and provide supportive care, and teach and counsel
patients and their families.
Nurse practitioners: registered nurses with a master's or
doctoral degree.
Licensed nurse practitioners diagnose and manage illness and
disease, usually working closely with a doctor. In many
states, they may prescribe medications.
Registered nurses (RN): these are nurses with associate or
bachelor degrees who are licensed to practice nursing. They
administer medicines (often including chemotherapy), start
and monitor IV pumps, take vital signs, and provide other
hospital and clinical care. They also provide patient and family
education.
Licensed practical nurses (LPN): these are nurses who have
completed training in a vocational school or community college
program and have passed a state licensing exam. They do a
variety of tasks to care for patients at the bedside or in
clinics.
Oncology Social Workers: a person with a master's degree in
social work who is an expert in coordinating and providing
non-medical care to cancer patients. The oncology social
worker provides counseling and assistance to people with
cancer and their families, with things like financial problems,
housing (when treatments must be taken at a facility away
from home), and child care.
Pediatric psychologists are also part of many comprehensive
care teams. Psychologists generally have doctoral degrees
and are licensed to practice after passing a written exam.
Some psychologists specialize in oncology. They help patients
understand and talk about their cancer. They are skilled in
helping young people use a variety of techniques to handle
surgery, radiation therapy, chemotherapy, nausea, pain, IVs,
injections, procedures, scans, and other tests. Psychologists
also look at educational needs and work with patients,
parents, and other team members to assist with school
issues. They evaluate children's mental and emotional state
and provide counseling to children and adolescents to help
them cope with their illness. They make referrals for mental
health services in the family's home community. There
usually is a charge associated with their professional
services.

Recreational therapists or child life workers encourage
children and adolescents to participate in therapeutic play
activities designed to maintain and improve physical and
mental health. Such activities also provide distraction and
relief of stress and anxiety during treatment, tests and
procedures. These professionals also work closely with social
workers, team psychologists and psychiatrists. They
generally have advanced degrees.

School teachers are often part of comprehensive care teams
and must have the same training, qualifications, and state
licenses as all teachers. They bridge the gap between the
hospital and school, and instruct students based on plans
outlined by patients' teachers in their home community. They
are usually available in both inpatient and outpatient settings.

Chaplains are available in most medical centers. They provide
for the spiritual needs of the patient and family. They often
coordinate their efforts with a family's pastor or minister.
In addition to a divinity degree and other advanced degrees,
they generally have received special training in working with
the ill and dying. In teaching hospitals they may be involved in
teaching and training.

Talking With the Health Care Team

Good communication among patients, families, and health care
team members is essential for satisfaction and for the
quality of care that is offered and received. The intensity,
complexity, and length of treatment and post-treatment
care require that everyone involved develop confidence and
trust in one another and be able to work well together. Most
of the time, children with cancer and their families
encounter doctors, nurses, and other team members with
whom they can develop good rapport. In other situations,
however, despite the competence of the caregivers,
particular personalities and styles may clash and all may not
go smoothly. Fortunately, patients and parents usually find
that there are particular team members with whom they can
form positive relationships and have good communication.

Confidence is the result of knowing that doctors and all team
members are well trained and experienced in treating cancer
in young people, and that the institution and its programs
meet the highest standards. The qualifications and
credentials of all team members should be readily available.
The institution's status and reputation can easily be
verified. Trust in individuals, however, will only come with
time and the experience of sharing decisions and going
through diagnosis and treatment.

Parents generally are the experts on their children. It is as
important for them to have that expertise recognized, as it
is for professionals to have their knowledge and skills
recognized. Parents can help team members know how best
to deal with their children. Team professionals, who have
experience with many children coping with cancer, can often
assist parents with suggestions about what strategies seem
to work best. Good communication requires an atmosphere of
mutual respect for what each person brings to the joint
effort to tackle any problem.

Communication with others in whom you have confidence and
whom you trust and respect, will be effective if it is clear,
direct, and honest. Clear communication implies that what is
said is understandable and what is heard is understood. Team
members need to determine that the information they are
giving is complete and in words that patients and families can
understand. Similarly, children with cancer and parents need
to state their thoughts, opinions, and feelings clearly and ask
their questions directly. They also need to check that they
are being heard. Because of the emotion involved in a cancer
diagnosis, it is often necessary to repeat conversations and
to ask questions more than once. This is normal and is
preferable to misunderstanding what has been communicated.

Here are suggestions for effective communication with the
health care team:

Become a partner and actively participate in the patient's
care
Develop and expect an attitude of respect and cooperation
Provide accurate information about a child's and family's
relevant history
Keep a list of questions for doctors or other team members
Take notes when having important conversations with doctors
Ask for explanations of medical or other terms not
understood
Inform team members of doubts, concerns, misgivings about
information given or about requests made of the child with
cancer
Have reasonable expectations about the time team members
have available for each patient and family
Let team members know the family's and patient's
preferences regarding the way care is provided
Develop positive relationships with team members
Help children and adolescents develop trust in team member
Expect patient and family information to be treated in a
confidential manner
Make sure both parents have direct and equal access to
doctors and other team members
Recognize and accept that communication and other problems
will occur because of the many professionals involved in
caring for patients
Address confusion, frustrations, or disagreements directly
with the team member believed to be the source of these
Seek help from other team members only if initial efforts to
resolve conflicts directly are unsuccessful
Using Psychosocial Support Services

Childhood cancer has an impact on all aspects of family life.
Concern about this, and a desire to promote the normal
growth and development of children, led to the current
approach to care that gives attention to all parts of the
child's life and to the child's family. Most centers have an
array of services and programs to support children and
family members through the entire illness experience, from
diagnosis through treatment and during the months and years
of post-treatment monitoring. In many centers these
services and programs are available to all and are free.

Cancer in a child is usually a new experience for all family
members. It is a very stressful experience, so it is not
surprising that families need education, support and
counseling to cope effectively with it. Any support services
are optional, but parents are more likely to be satisfied with
the overall care of their child if they take advantage of what
is available.

Some of the common types of services available from
psychosocial professionals on the team are:

Advocacy (including financial advocacy): Helps children and
families understand and manage the complex medical care
system and identify and make use of relevant programs,
financial assistance, policies, and legislation
Education: Teaches about the normal and expected social and
emotional effects of a cancer diagnosis and treatment on
children and families, about coping strategies, and about
stress management and other techniques to help adjustment
Supportive counseling: Provides listening, empathy, and
expression of normal feelings to help children with cancer
and families deal with the stressors experienced during
diagnosis and treatment
Psychotherapeutic and behavioral interventions: Helps
manage anxiety, fear, anger, guilt, and feelings of depression
in both children and family members
Resource provision or referral: Assists families in obtaining
meals, lodging, transportation, and/or emergency assistance
Consultation: Provides community-based psychosocial
professionals for illness-related services to children and
families
There are also many different types of programs available to
children and families through the cancer center team. Some
of these are provided in the hospital setting and others are
more likely to be found in the community. They can usually be
found through team social workers, psychologists, and nurses.
They may include:

Support groups: These may be for parents, siblings, or
children with cancer, or for specific groups of patients, such
as teenagers or brain tumor patients. Some are offered in
hospitals and clinics, and others through organizations such as
the American Cancer Society, The Leukemia & Lymphoma
Society, or the Andrew Christian Bryce Foundation.
School programs: Medical centers may have organized school
programs, planned school re-entry programs, educational
programs for school personnel, and contact with classroom or
homebound teachers. Some use volunteers for tutoring.
Patient-parent visitation programs: Where available, these
programs facilitate parents meeting other parents based on
common factors, such as children's ages or diagnoses or the
area in which they live.
"Buddy" programs: These programs use volunteers (
sometimes university or medical students ) to play with or
befriend patients.
Summer Camps: Many medical centers, communities, or
agencies, such as the American Cancer Society, sponsor
summer camps for children with cancer and sometimes
siblings. The focus is on the recreational aspects of the
camping experience, rather than on having cancer.
Special Events: Medical centers often develop special
programs to meet fundraising, recreational, or educational
needs of children with cancer and families, such as
conferences on specific diagnoses, parent weekends, picnics,
survivors' days.
Wish Fulfillment Organizations: A variety of agencies exist
to grant the wishes of seriously ill children, including cancer
patients. Some accept parent referral, but most ask for
referral from a doctor or other team member.
Ronald McDonald Houses: These houses originally were
created to provide a "home away from home" for children
with cancer and their families. Now they often serve
children with other serious illnesses as well. They provide
parents and children who are outpatients a place for respite
and relaxation, an alternative to hospitalization, and low or
no-cost housing. They also help provide parent-to-parent
support.