CORE--EDUCATION PROGRAM

我们的教育计划的目的是：A）提供方案， 北方加州的专业人士和准专业人士， 提高镰状细胞病患者的医疗水平 疾病（SCD）和其他血红蛋白病; B）提供科学的 研讨会和临床会议，以保持镰状细胞中心的参与者 了解该领域的最新发展，并鼓励交叉 思想的滋养; C）培训镰状细胞教育者和咨询师 在向个人提供基本信息和采取适当后续行动方面， 筛查外周血红蛋白性状（产前和儿科） D）教育患有SCD或其他血红蛋白病的患者 和他们的家人关于他们的障碍的性质，以及如何寻求 适当的医疗护理; E）暴露高中，大学和 专业学生的临床问题和研究， 血红蛋白病，希望能激发未来参与 F）制作教材，支持教育 推广活动，并加强口头提供的信息;以及 （一）参与社区教育工作。 项目 成绩包括评估教育的必要性， 医生和护士关于疼痛管理;成功的 辅导员/教育工作者培训课程， 参与者关于SCD，镰状细胞性状和其他血红蛋白病; 和发起关于扩大教育的重要性的研究， 关于SCD的信息系列，以便他们可以提供支持， 新诊断患者的主要照顾者。 专业，耐心 和社区教育的需要已经得到解决， 和视听材料;在医院和保健机构讲课 在整个加州的设施;赞助“家庭教育之夜”; 帮助患者在营地环境中了解SCD;提供临床 少数民族高中、大学和研究生的研究经验 学生;并在健康博览会和社区组织中展示。 除了这些活动外，我们建议提供更多教育， 医生和护士了解疼痛管理并评估疼痛的影响 这些努力;扩大我们的镰状细胞计划毕业生的基础 辅导员/教育工作者课程，包括更多的少数民族成员 团体;设计协议，以帮助发展单基因咨询 培训计划;以确定增强患者的影响 新冠肺炎患者家庭适应教育模式的研究 为青少年和患者的兄弟姐妹开设课程; 开发有效、可靠的工具来测试关于SCD的知识， 参与我们的计划;并协调教育活动， 其他镰状细胞社区和国家组织。

The aims of our education programs are: A) to provide programs for professionals and para-professionals in Northern California that will improve the level of medical care available for patients with sickle cell disease (SCD) and other hemoglobinopathies; B) to offer scientific seminars and clinical conferences to keep sickle cell center participants abreast of the most recent developments in the field and encourage cross fertilization of ideas; C) to train sickle cell educators and counselors in providing basic information and appropriate follow-up to individuals screened for hemoglobin traits in outlying (prenatal and pediatric) clinics; D) to educate patients who have SCD or other hemoglobinopathies and their families about the nature of their disorder and how to seek medical care appropriately; E) to expose high-school, college and professional students to clinical issues and research in hemoglobinopathies with the hope of inspiring future involvement in the field; F) to produce educational materials to support educational outreach activities and to reinforce verbally presented information; and G) to be involved in community education efforts. Project accomplishments include assessment of the need for education of physicians and nurses about pain management; the success of the counselor/educator training course in raising the knowledge level of participants about SCD, sickle cell trait and other hemobloginopathies; and initiation of research on the importance of awareness by the extended family of information about SCD so that they can provide support to primary caregivers of newly diagnosed patients. Professional, patient and community education needs have been addressed by producing written and audiovisual materials; lecturing at hospitals and health care facilities throughout California; sponsoring "Family education nights"; helping patients to learn about SCD in a camp setting; providing clinical and research experiences for minority high school, college and graduate students; and presenting at health fairs and community organizations. Beyond these activities, we propose to provide more education for physicians and nurses about pain management and evaluate the impact of these efforts; broaden our base of program graduates of the sickle cell counselor/educator course to include more members of ethnic minority groups; design protocols to aid development of single gene counseling training programs; to determine the impact of an enhanced patient education model on family adaptation in families of newly diagnosed patients; develop classes for adolescents and siblings of patients; develop valid, reliable instruments to test knowledge about SCD in participants in our programs; and coordinate educational activities with other sickle cell community and national organizations.