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• W2040805623 abstract "As a Certified Child Life Specialist (CCLS) for the Duke Pediatric Blood and Marrow Transplant program, one has to be prepared to provide specialized services to all children. A CCLS has been trained to incorporate age, diagnosis, developmental level and special needs in the assessment of each patient. When a teenage girl with secondary leukemia and severe autism was referred for a bone marrow transplant, all skills were put to the test. As a team, we worked proactively to ensure a smooth and safe transition from her home hospital to our transplant facility. Our initial challenge was to anticipate the needs of this patient before we had a chance to meet her. A picture of the CCLS was taken (labeled “a safe friend”) and sent to the patient to begin building a rapport. The CCLS, social worker and nurse coordinator corresponded regularly with the patient's caregiver before their arrival to Durham. This dialogue provided our team with information that helped form her detailed plan of care, and served as a base to build a trusting relationship. After learning about the patient's communication style, photographs were taken of doctors, nurses, buildings, exam rooms, patient room, hallway and waiting area, elevators, procedures, medical instruments - even mouth care brushes. The pictures were printed and labeled with detailed descriptions using the five senses, then mailed to the patient and family. Our goal was to prepare the patient for a new care team and medical environment. Our second challenge was to ensure a safe, trusting, and comfortable inpatient stay. Because disruptions to routine would often lead to negative behavior, we provided a structured schedule, consistent caregivers, and a plan designed to help the patient cope with unexpected events. The CCLS worked closely with the staff, psychosocial team, and quality of life team educating them on the necessity to give extra preparation time before transitions and/or procedures to allow for successful cooperation from the patient. In addition, the patient responded well to incentives (particularly food) to encourage cooperation for necessary daily activities. This experience has provided our transplant team with a deeper understanding of how to best serve these patients. The knowledge gained helped us create a model to implement for future transplant patients we encounter who fall within the autism spectrum." @default.
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• W2040805623 date "2011-02-01" @default.
• W2040805623 modified "2023-09-26" @default.
• W2040805623 title "Meeting the Challenge: Developing a Model to Care for an Adolescent Patient With Leukemia and Severe Autism" @default.
• W2040805623 doi "https://doi.org/10.1016/j.bbmt.2010.12.391" @default.
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