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Spring 2010
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Programs Help Youngsters to Thrive in Spite of Pain


VS-Spring2010-ChildPainThanks to the evolution of the latest medical technologies, children with serious illnesses are living longer than ever. But, according to Elana Evan, Ph.D., director of the UCLA Children’s Comfort Care Program (CCCP), the goal is to help these children thrive, not just survive.

Research shows that how children perceive pain and cope with stress related to their diseases actually affects how they experience pain and respond to treatment,” Dr. Evan says. Many of these children spend months, or even years, in the hospital with conditions ranging from heart, liver and other ailments that require transplantation, to cancer, neurodegenerative disorders and rare genetic diseases, Dr. Evan explains. “Beyond providing excellent medical care, it’s important to make the children and their families feel cared for and empowered,” she says. “It’s a positive feedback loop that improves the entire care experience.”

The CCCP team, which includes physicians, nurses and therapists as well as a pediatric chaplain and social worker, integrates pain management and behavioral and psychosocial strategies to develop creative quality-of-life plans designed to help seriously ill children reach their short- and long-term goals, given their unique situations. The team also works to make families feel more comfortable by facilitating open communication with healthcare providers, guiding parents through difficult, day-to-day medical decision-making processes and coordinating care between many different specialists.

Because of the range and complexity of issues for children with multiple simultaneous conditions, planning a course of treatment requires innovative thinking from a multidisciplinary team of specialists who identify the most appropriate therapies and determine how best to administer them to vulnerable pediatric patients, says Lonnie Zeltzer, M.D., director of the Pediatric Pain Program at Mattel Children’s Hospital UCLA. “It’s important to present a coordinated plan of care because the worst thing you can do to families in this situation is to have everyone offering different opinions about what is best for their child,” Dr. Zeltzer says. At UCLA, care extends beyond the hospital setting, with an outpatient clinic to help children transition to home. According to Dr. Zeltzer, many children with multiple complex illnesses that require repeated hospitalizations and numerous medical procedures may actually be affected by post-traumatic stress disorder (PTSD), which increases their pain signals. To help address PTSD, an integrative pain team provides techniques including yoga, craniosacral massage, art and music therapy, hypnotherapy, acupuncture, biofeedback, meditation and psychological therapies, such as learning to use imagery to manage pain. No matter what technique is ultimately used to provide comfort to pediatric patients, Dr. Zeltzer encourages children and their families to assert their right to receive care that goes beyond symptom management. For more information on the UCLA Children’s Comfort Care Program, go to: www.uclahealth.org/cccp For information about the UCLA Pediatric Pain Program, go to: www.uclahealth.org/pedspain

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