Improving Healthcare for Individuals and Families Living with Sickle Cell Disease

描述（由申请人提供）：提议的小型会议的总体目标是改善北卡罗来纳州SCD患者的医疗保健体验。第二个目标是改善北卡罗莱纳州SCD患者的健康和生活质量。最后一个目标是增加北卡罗来纳州镰状细胞病专家护士的数量。为期两天的会议将针对护士（主要目标）、护理学生和SCD患者家庭，并提供有关儿童和成人镰状细胞病（SCD）复杂性的全面知识。会议提出了一种新的教育模式，即在同一教育场所向护士、病人和患有SCD的家庭提供教育。会议还将通过增加作为SCD冠军培训的护士人数（拟议会议的一个新组成部分），提高对参加会议的护士以外的护士的培训能力。为期两天的会议将在杜克大学护理学院（DUSON）举行，每天都有不同的重点。会议将涵盖与SCD相关的广泛主题，包括儿童和成人镰状细胞病的遗传学，病理生理学，医学和社会心理并发症。第一天的重点是照顾成人，第二天的重点是照顾孩子

DESCRIPTION (provided by applicant): The overall objective of the proposed small conference is to improve the healthcare experience of individuals with SCD in North Carolina. A second objective is to improve the health and quality of life of persons living with SCD in North Carolina. A final objective is to increase the number of nurses trained as sickle cell experts in North Carolina. The proposed two-day conference will target nurses (primary target), nursing students, and families with SCD, and provide comprehensive knowledge of the complexity of sickle cell disease (SCD) in children and adults. The conference proposes a new model in which to deliver education by delivering education to nurses, patients and families living with SCD, in the same educational venue. The conference will also increase the capacity to train nurses beyond those that attend the conference by increasing the number of nurses trained as SCD Champions, a novel component of the proposed conference. A two day conference will be offered at the Duke University School of Nursing (DUSON), each day with a different focus. The conference will cover a broad range of topics related to SCD including genetics, pathophysiology, medical, and psychosocial complications of sickle cell disease in children and adults. Day one will focus on the care of the adult and day two will focus on the care of the child and adolescent with SCD, and provide specific education to patients and families living with SCD. In addition to marketing to nurses and nursing students, we will specifically market Day 2 of the conference to the community and encourage attendance by individuals with SCD, and family members of children with SCD. By providing both core and breakout sessions on both days, we will be able to address educational needs of providers, patients, and families. Our goal is to include an opportunity for interaction and communication among healthcare providers and individuals and families experiencing SCD. Finally, we will measure healthcare provider attitudes towards persons with SCD, and their knowledge of SCD prior to the conference, at the end of the conference and following the conference.