Family and Patient Support Programs

The CHOC Neuroscience Institute recognizes the challenges our patients and their families face day in and day out, and we have multiple specialty programs and services designed to address the individualized needs of each patient and their family.

• The “Helping Families Cope” room features a computer with Internet access and e mail availability, educational pamphlets, books and videos, and it is open 24 hours a day, 7 days a week. The resource room is conveniently located on the dedicated neuroscience uni

Our Specialty Staff

In addition to physicians and nurses, The CHOC Neuroscience Institute is staffed with specially trained individuals who are focused on providing unparalleled, compassionate care to patients with neurological conditions. Meet some of our staff:

Child Life Specialists

• Focus on the emotional and developmental needs of patients and their families at The CHOC Neuroscience Institute.
• Use play and other forms of communication to reduce the stress and decrease the anxiety surrounding the hospital experience, and enable children and families to cope in a positive manner.
• Assess the psychosocial needs of patients and families, and provide appropriate therapeutic activities to meet the wide array of unique individual needs.

Physical Therapists/Occupational Therapists/Speech Therapists

• Travel to the bedside and also work with patients in the outpatient setting.
• Physical therapists teach exercises and physical activities that help condition muscles of neurologic patients, restoring strength and movement.
• Occupational therapists teach patients how to master activities of daily living.
• Speech therapists help neurologic patients address their communication and swallowing problems.

Pain management/anesthesiologists

• Offer the finest in pain management to make children as comfortable as possible.
• Provide brief general anesthetics for several diagnostic and therapeutic procedures, especially for newly diagnosed and younger children.
• Teach children ways to cope with physical discomforts via management techniques including education, relaxation, biofeedback and guided imagery. Available on an inpatient and outpatient basis to help our Institute patients.

Complementary and Alternative Medicine Treatment Services

• Complementary and alternative treatment options are offered as an adjunctive therapy with the goal of improving quality of life of the pediatric oncology patients. We provide treatment options that alleviate and reduce the side effects of conventional oncology treatment by reducing pain, nausea and vomiting often caused by surgical intervention, chemotherapy and radation therapy.
• The treatment therapy also helps alleviate patient anxiety and depression that occur with recurrent cancer patients.

Dieticians

• Understand how treatment for neurologic conditions affects both appetite and how food is absorbed, and work carefully with the healthcare team to ensure that patients receive the nutrition they need.
• They play an integral part of the care team – accompanying physicians on rounds, working with the pharmacists, and interacting with nurses to provide the best nutrition possible.

Respiratory Therapists

• Evaluate, treat and care for neurologic patients who also have breathing disorders.
• They work both at the bedside and in the outpatient setting.

Social Workers

• Assist patients and families in coping with the physical and psychological challenges of the diagnosis and treatment of a neurologic condition.
• Help children and other family members understand and adapt to the changes in their lives.
• Answer questions in both English and Spanish regarding finances, insurance and discharge planning.

Psychologists

• Possess special expertise in diagnostic testing, therapy, counseling for common emotional problems associated with neurologic conditions.
• Are available for consultations with parents, schools, physicians and other healthcare providers.

Social Services

Social workers specially attuned to the needs of patients with neurologic concerns, 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 neurologic conditions, our social workers are able to link families with community resources for emotional, as well as financial, support. They assist families with 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.

Case Management Services

Each patient is assigned a dedicated R.N. case manager. The case managers work with all members of The CHOC Neuroscience Institute health care team to coordinate care from pre-hospitalization of the neurologic patient to the patient’s return home -- helping patients and their families navigate the health care system while always maintaining continuum of care. Our 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 a neurologic condition can be overwhelming. The CHOC Neuroscience Institute has a dedicated psychology team who works closely with patients and families to help them cope with the emotional and psychological stress of neurologic conditions. Psychologists provide an initial consultation when the patient first meets with The CHOC Neuroscience 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 Neuroscience 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. Patients at The CHOC Neuroscience 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. They 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.

They are also 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 neurologic conditions, and work closely with siblings to help them address their concerns. Since the physical limitations and emotional stress of a neurologic condition 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 neurologic conditions:

• Pet Therapy – Pet therapy is available two to three time a week for both inpatients and outpatients at The CHOC Neuroscience 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. 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.

Rehabilitation Services

Rehabilitation Services is committed to helping children with neurologic conditions 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 their condition, children with neurologic conditions 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.

Other innovative programs designed to keep children physically active are karate and yoga. These programs are designed to address physical, behavioral and social issues that children with head injury or other neurologic conditions face.

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 treatments better and recover from their illness. 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.