When a young person is diagnosed and treated for cancer, both patient and family enter the strange, complex, and often frightening world of modern medicine. Hospitals and major medical centers can be vast and confusing places with seemingly endless corridors and many buildings. Hospital rooms can be drab and scary. Many professionals have questions, tests to perform, and information to give. Medical terms can sound like a foreign language. There are endless forms to be completed. Contact with insurance or managed care providers increases as families check coverage, seek approval for tests and procedures, or question payment for care. The schedules and routines of daily family life are changed to accommodate the time-consuming treatment plan. Family members are separated as one parent returns to work and siblings attend school. Parents must give up some control of their child and place their trust in members of an as yet unknown 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 learn 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 members 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 some suggestions to help patients and families begin to understand and cope with the health care system:

• Ask for maps or a tour of the hospital.
• Have each person explain the part they play in providing care.
• Find out exactly where treatment will take place.
• Make hospital rooms as homey as possible.
• Have activities on hand for time spent in the 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 child’s doctor or their family doctor for an accurate diagnosis and treatment. Cancer, however, requires the help of 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 can also 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 takes into account the whole patient and all his or her needs, not just the medical or physical ones. Comprehensive care – using the services of many professionals working 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 who are experts in treating childhood cancer

• availability of a wide range of services for patients and families, including advocacy, education, counseling, support groups, and other special programs to improve the quality of life of patients and their families

• resources to meet basic needs, such as meals, lodging, and 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 treatments and services

What Is a Comprehensive Cancer Center?

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

• take part in clinical trials
• be involved in research connected to clinical services
• 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 outcomes (such as survival rates) are better for children treated at hospitals staffed by child cancer specialists.

Most medical centers treating children and teenagers with cancer are members of 1 of 2 national clinical trials cooperative groups. The National Cancer Institute is one. The other large group that includes children’s research groups is the Children’s Oncology Group (COG). Within this large group, there are 4 groups that conduct studies of new treatments (clinical trials) for children. 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.

Treating institutions follow strict guidelines 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 either the new treatment being studied or standard treatment. Families are free to reject enrolling their child in a clinical trial and can choose instead to receive the standard treatment, that is, treatment generally accepted as the best currently available.

Where Do Children and Adolescents Receive Treatment?

Most children with cancer are treated at large pediatric cancer centers in clinical trials of the major study group sponsored by the NCI through the Children’s Oncology 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.

When hospitalized, 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 Are the Members of the Comprehensive Health Care Team?

Many experts from different disciplines (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 figure out what each patient and his or her family need in order to cope most effectively with cancer and its treatment. They 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 additional 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 told 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.

Here is a list of some of the doctors who may be involved in caring for children with cancer:

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: pediatricians training to become hematologists or oncologists

pediatric residents: 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.

radiologist: a doctor 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 surgeon: a doctor who performs surgery to treat medical problems

thoracic surgeon: a doctor who performs surgery to the chest cavity

neurosurgeon: a doctor specializing in operations to treat nervous system disorders

neurologist: a doctor who treats the problems of the nervous system

ophthalmologist: a medical doctor who specializes in diseases of the eye

orthopedic surgeon: a surgeon who specializes in diseases and injuries of the bones

pathologists: doctors who specialize 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 prescribe medications and can also provide counseling.

urologist: a doctor who specializes in treating problems of the urinary tract in men and women, and of the genital area in men

endocrinologist: a doctor who specializes in diseases related to the glands of the endocrine system, such as the thyroid, pancreas, and adrenal glands

gynecologist: a doctor who specializes in women's health

anesthesiologist: a doctor who specializes in giving medicines or other agents that prevent or relieve pain, especially during surgery

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.

Important services are also provided by:

radiation therapists: people with special training to work the equipment that delivers radiation therapy

pharmacologists: 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: experts 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 doctors, nurses 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 and emotional 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 specialize in the care of cancer patients. Oncology nurse specialists may prepare and give 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): nurses with associate or bachelor degrees who are licensed to practice nursing. They give medicines (often including chemotherapy), start and monitor IV medications, take vital signs, and provide other hospital and clinical care. They also provide patient and family education.

licensed practical nurses (LPN): 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. They can help with issues such as financial problems, housing (when treatments must be taken at a facility away from home), and finding 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 a child’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, but insurance may cover at least a portion of it.

recreational therapists or child life workers encourage children and adolescents to take part in 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 experts also work closely with social workers, team psychologists and psychiatrists. They generally have advanced college degrees.

school teachers are often part of complete care teams and must have the same training, credentials, 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 spiritual caregiver. 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 most important. 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 develop a bond with the doctors, nurses, and other team members providing care. Sometimes, 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 certain 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 educational background and credentials of all team members should be readily available. The institution's status and reputation can easily be established. Trust in individuals, however, will only come with time and the experience of sharing decisions and going through diagnosis and treatment.

Parents are 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 learn how best to deal with their children. Health 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 heard 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. In the same way, children with cancer and parents need to state their thoughts, opinions, and feelings clearly and ask their questions directly. They also need to be certain that they are being heard. Because of the emotions involved in a cancer diagnosis, it is often necessary to repeat conversations and to ask questions more than once. This is normal and it is better than 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 mutual respect and cooperation.

• Provide accurate information about your child's and the 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 you don’t understand.

• Inform team members of doubts or concerns about information given or about requests made of the child with cancer.

• Have reasonable expectations about the time team members can spend with 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 teens 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 anticipate that communication and other problems will occur because of the many experts involved in caring for patients.

• Address confusion, frustrations, or disagreements directly with the team member involved.

• Seek help from other team members only if first efforts to resolve conflicts directly are unsuccessful.

Using Psychosocial Support Services

Childhood cancer has an impact on all aspects of family life. For this reason, the current approach to care pays attention to all parts of the child's life and to the child's family. Most centers have a broad range 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 after treatment. 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 can be very stressful, so it is not surprising that families need education, support and counseling to cope with it. All 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 programs, financial assistance, policies, and bills.

Education: instruction about the normal social and emotional effects of a cancer diagnosis and treatment for children and families, about coping strategies, and about stress management and other helpful techniques.

Supportive counseling: provides listening, empathy, and a way for children and family members to express feelings that result from the stress of cancer.

Psychotherapeutic and behavioral interventions: help children and family members manage anxiety, fear, anger, guilt, nausea that occurs in anticipation of medications and feelings of depression.

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. 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. These programs 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 Candlelighters 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 help parents meet 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 fun 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 parental referral, but most ask for referrals 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.

Additional Resources

More Information from Your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-ACS-2345.

• After Diagnosis: A Guide for Patients and Families (also available in Spanish)

• Because Someone I Love Has Cancer

• Closing the Umbrella

• What Happened to You, Happened to Me

• When Your Brother or Sister Has Cancer

• Where to Turn – Patient and Family Support Program Overview

The following books are available from the American Cancer Society. Call us at 1-800-ACS-2345 to ask about costs or to place your order.

• Angels and Monsters: A Child's Eye View of Cancer

• Cancer in the Family: Helping Children Cope With a Parent’s Illness

National Organizations and Web Sites*

In addition to the American Cancer Society, other sources of patient information and support include:

American Society of Pediatric Hematology/Oncology
Telephone: 1-847-375-4716
Internet Address:www.aspho.org

American Brain Tumor Association
Telephone: 1-800-886-2282
Internet Address: www.abta.org

Candlelighters Childhood Cancer Foundation
Telephone: 1-800-366-2223 or 1-800-366-CCCF
Internet Address: www.candlelighters.org

Child Life Council
Telephone: 1-301-881-7090
Internet Address: www.childlife.org

CureSearch National Childhood Cancer Foundation
Telephone: 1-800-458-6223
Internet Address: www.curesearch.org

Harriet Lane WWW Links (maintained by Johns Hopkins University)
Edited collection of pediatric resources
Internet Address: www.derm.med.jhmi.edu/poi

National Brain Tumor Foundation
Telephone: 1-800-934-2873 or 1-800-934-CURE
Internet Address: www.braintumor.org

National Cancer Institute
Telephone: 1-800-4-CANCER or 1-800-422-6237
TTY: 1-800-332-8615
Internet Address: home.ccr.cancer.gov/oncology/pediatric

The National Children's Cancer Society, Inc.
Telephone: 1-800-5-FAMILY or 1-800-532-6459
Internet Address: www.nationalchildrenscancersociety.com

National Coalition for Cancer Survivorship
Telephone: 1-877-622-7937 or 1-301-650-9127
Internet Address: www.cansearch.org

The Leukemia & Lymphoma Society
Telephone: 1-800-955-4572
Internet Address: www.lls.org

Other Publications*

National Cancer Institute Publications

Call 1-800-422-6237 or 1-800-4-CANCER
Publications Direct Line: 1-800-332-8615
Web site: http://cancer.gov/publications

• Care for Children and Adolescents with Cancer: Questions and Answers

• Taking Part in Clinical Trials: What Cancer Patients Need to Know

• When Someone in Your Family Has Cancer

• Young People with Cancer: A Handbook for Parents

*Inclusion on this list does not imply endorsement by the American Cancer Society.

The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800 ACS 2345 at any time, 24 hours a day.

References

Bleyer WA. The impact of childhood cancer in the United States and the world. CA- Cancer Journal for Clinicians. 1990; 40:355-367. (6): 1345-1336.

Bracken JM. Children with Cancer: A Comprehensive Reference Guide for Parents. New York: Oxford University Press, 1986.

Fromer MJ. Surviving Childhood Cancer: A Guide for Families. Oakland, Ca, New Harbinger Publications, 1998.

Janes-Hodder H, Keene N, Hodder HJ. Childhood Cancer: A Parent's Guide to Solid Tumor Cancer. Sebastopol, Ca, O'Reilly & Associates, 1999.

Keene N. Childhood Leukemia: A Guide for Families, Friends & Caregivers. Cambridge: O’Reilly & Associates, 1997.

Keene N, Prentice R. Your Child in the Hospital: A Practical Guide for Parents. Cambridge: O’Reilly & Associates, 1997.

Lauria MM, Hockenberry-Eaton M, Pawletko TM, Mauer A. Psychosocial protocol for childhood cancer: A conceptual model. Cancer. 1996; 78.

Lozowski-Sullivan S. Know Before You Go: The Childhood Cancer Journey. Bethesda, MD: The Candlelighters Childhood Cancer Foundation, 1998.

Morrra M, Potts E. Choices. New York: Avon Books, 1994.

Steen RG, Mirro J (editors). Childhood Cancer: A Handbook from St. Jude Children's Research Hospital. Cambridge, Ma. Perseus Publishing, 2000.

Revised: 10/25/2005