Family and Patient Support Programs

The CHOC Cancer Institute offers a variety of programs designed to help children and their families cope with the unique challenges posed by cancer. Other programs are geared to the special medically related needs of cancer patients.

The following is an overview of these special family support programs, medically related needs programs and educational tools:

School Reintegration Program

Returning to school after being extremely sick with cancer can be a frightening experience. Some children may have a different appearance, and others may experience a problem with learning. At CHOC, a dedicated school reintegration specialist serves as a liaison between the patient and the school, communicating both at the time of diagnosis or when the child is ready to return to the school environment. Psychologists at CHOC test children in terms of their academic and social skills, and communicate their findings with the school reintegration specialist, who then speaks with the principal and teachers at the child’s schools. Special programs are instituted to help ease the transition back to the classroom. Our school reintegration specialist also visits the child’s classroom, where she educates school mates about cancer and teaches them to treat their returning friend with compassion and respect.

To help ease the reintegration back to school, and keep patients from getting too far behind in school, The CHOC Cancer Institute also provides schooling in the hospital setting. Children who are hospitalized can continue to meet their school assignments with the help of a teacher from the Orange Unified School District who is on site full time at CHOC.

Social Services

Social workers specially attuned to the needs of cancer patients, and with billingual capabilities, help families address a variety of challenges. They meet with families at the time of diagnosis and work with them throughout the course of treatment, providing emotional support and continuous contact. In addition to offering supportive counseling to assist families in coping with the unpredictability of cancer, our social workers are able to link families with community resources for emotional, as well as financial, support. They help facilitate the completion of forms, arrange for housing close to the hospital if necessary (including stays in the Ronald McDonald House), coordinate transportation to and from the hospital, navigate the financial paperwork, and address any work issues that parents are facing.

Just talking to someone else who has been through the same experience can bring enormous relief to parents worrying about a sick child. Our Social Services program facilitates the Spanish Speaking Parent Support Group designed specially for cancer patients. Support groups are available for both English and Spanish speaking patients and their families.

Case Management Services

R.N. case managers help the patient and family navigate the health care system by improving continuity of care and facilitating communication. Our case managers work with all members of The CHOC Cancer Institute health care team to coordinate care from pre-hospitalization of the cancer patient to the patient’s return home -- helping to eliminate fragmentation in the health care delivery process. Case managers, who also coordinate outpatient needs as they arise, communicate regularly with insurance companies, California Children’s Services (CCS) and MediCal to ensure optimal relations and make financial arrangements.

Psychological Services

The psychological issues patients and families deal with when coping with cancer can be overwhelming. The CHOC Cancer Institute has a dedicated psychology team who works closely with patients and families to help them cope with the emotional and psychological stress of cancer. Psychologists provide an initial consultation when the patient first meets with The CHOC Institute team, and provides assessments throughout the patient’s hospitalization. Psychology services are then available as needed for patients, parents and siblings. The psychology team assesses and treats such issues as depression, anxiety, phobias (to medical procedures), anger, sleep difficulties, loss and grief, and behavioral problems.

Child Life Services

The ultimate goal of Child Life Services at The CHOC Cancer Institute is to make children as comfortable as possible before, during and after hospitalization. Our child life specialists help decrease anxiety surrounding diagnosis, treatment and hospitalization by using medical play and explaining treatment and procedures in language appropriate to the patient’s age and development. They are experts in non-pharmacological pain management techniques, including guided imagery in the acute setting. They also teach other family members the coping skills they may need to care for a child with cancer, and work closely with siblings to help them address their concerns. Since the physical limitations and emotional stress of cancer can disrupt a patient’s normal social growth and development, our child life specialists strive to provide children with as many normal life experiences as possible during treatment. They act as advocates for the patient and family, and provide bereavement support in case there is a loss.

Child Life Services has several programs designed to help children and their families cope with cancer:

• Pet Therapy – Pet therapy is available two to three time a week for both inpatients and outpatients at The CHOC Cancer Institute. Specially trained dogs who have been meticulously bathed and groomed visit children while they receive their chemotherapy treatments or at the bedside. These dogs bring smiles to the faces of our patients, allowing them to take delight in the joys of a pet during a very difficult time in their lives.
• Stop Gap Drama Program – The Stop Gap Drama Program is a not-for-profit organization that leads patients in weekly drama therapy, allowing patients 8 years and older to perform “on stage” in role-playing activities. Children experience what it is like to be the doctor or nurse, and the program gives them an opportunity to talk about issues they face such as difficulties in school, loss of freedom, loss of their hair or a body part. Through dramatic expression, these children can work through many of their concerns and issues.
• Discovery Arts – This movement therapy program brings dance and movement to our patients on a weekly basis. Simply by placing tap shoes on a child can stimulate them to get out of bed and enjoy the feeling of movement. This group also does face painting, helps the children dress up in costume, and gives out awards and trophies just … because.
• Entertainment – Child Life Services also provides arts and crafts on a regular basis to promote fine motor skills, and coordinates visits from puppeteers, “the bubble guy,” magicians, musicians and other entertainers. Celebrity visits include players from the Angels and Mighty Ducks teams.

Patients at The CHOC Cancer Institute truly benefit from Child Life Services. Our specialists help them cope with the many diagnostic tests they must undergo, and even accompany the child during the different procedures. They prepare children for what they may face – from an MRI scan to a lumbar puncture – providing emotional support and distraction during these challenging tests. The represent “safe” staff members, and children know that our child life specialists are there for fun and comfort – not for “treatment” or “procedures.” They are a crucial part of the health care team.

Rehabilitation Services

Rehabilitation Services is committed to helping children with cancer reach their potential – physically and socially – and return to home and school as quickly as possible. Using a comprehensive team approach, Rehabilitation Services offers the full array of physical, occupational, speech and hearing, respiratory and recreational therapy for infants, children and teenagers. Due to the debilitating effects of medication and radiation, children with cancer have unique rehabilitation needs. Physical therapists, occupational therapists and speech therapists work extremely closely with physicians to plan rehabilitation therapies. Children receive both one-on-one rehabilitation therapy and group therapy. Some of our innovative programs include yoga, which is a gentle way to keep these children physically active.

Dietary Services

Dietary Services staff members meet with children and their families when a child is first admitted to the hospital, and conduct a thorough nutritional evaluation. Our dieticians will also conduct a secondary screening to determine if the patient is at nutritional risk. The goal of Dietary Services is to optimize a patient’s nutrition status, which helps ensure they will tolerate their cancer treatments better and recover from their illness. Indeed, food is an important component in the fight against cancer. Dietary Services work to prevent or correct nutritional deficiencies, minimize treatment side effects, enhance quality of life during treatment, improve the patient’s ability to tolerate treatment, help achieve and maintain optimal body weight and teach patients how to incorporate nutrition into a comprehensive follow-up plan. Our team works closely with the physicians to determine special nutritional needs such as internal feeding or gastric tubes. We also closely monitor patients undergoing chemotherapy to ensure they are receiving the proper nutrition.

Hope Resource Room

The “Hope Room” -- created through a generous donation from the loving family of Sean’s Hope Foundation -- offers families educational resources including internet access, books and pamphlets. This information is cancer specific and disease specific, allowing families to learn as much as possible about their loved one’s condition. Since it is open 24 hours a day, it provides instantaneous access to information of vital importance to individuals coping with cancer. The computer also allows access to email, helping families keep in touch with friends and other family members on a continuous basis. Some of our families actually create a web site so that friends and family can check in on the progress of a patient without disturbing the parents and caregivers. The Hope Room is also staffed by volunteers, who provide one-on-one tutoring for families who are not familiar with the internet.

Teen Room

The Teen Room is a haven for CHOC’s adolescent patients with cancer. In this room, teenagers have access to the latest movies, teen approved web sites and video games, as well as a large screen TV. And every June, a Prom, complete with DJ, dancing and entertainment, is held for many of our teen patients and their dates. Everyone dresses up – including staff – and for a small moment in time, these cancer patients have the opportunity to do something very traditional and “normal” … attend a prom.

Patient Education Handbooks

The family of each child who is treated at The CHOC Cancer Institute receives a Patient Education Handbook available in English and Spanish. This comprehensive notebook is filled with valuable material, including hospital information, treatment descriptions, laboratory test overviews, home care instructions and signs of illness to look for when the patient returns home, and what to do in an emergency. These handbooks are highly personalized, and can be customized to the different cancer diagnoses and treatment alternatives. Pages can be added day after day, and families often carry them wherever they go – from hospitalization to follow-up appointments. The handbook also features a list of important phone numbers.

Special Cancer Resources

Our patient backpacks and patient care kits are two resources that help patients and families cope with hospitalization and follow-up care:

• Patient Backpacks – Upon admission to the hospital, every patient receives a backpack where he or she can store a patient education handbook and other needed supplies. It serves as a wonderful overnight bag, and helps keep all of the materials organized.
• Patient Care Kits -- These include food, toiletries, phone cards, cafeteria coupons and other items that patients need upon hospitalization. These thoughtful patient care kits help ease some of the stress of a cancer diagnosis and subsequent treatment.