CORE--COUNSELING, EDUCATION AND COMMUNITY OUTREACH

咨询、教育和社区外展项目的使命 是促进、维护和恢复镰刀患者的健康 细胞疾病和具有血红蛋白病特征的个体通过质量 教育和咨询。其目的是满足个人需求 患者和家属、卫生专业人员和社区受众以及 使用定量和定性的方法来评估这些项目的成功 努力。患者和家属项目的目标是： 为镰状细胞病患者及其家属提供支持； 帮助他们获得知识和技能，使他们能够 更好地了解和管理疾病；提供额外的宣传 为镰状细胞疾病研究参与者；并为个人提供 有风险的夫妇接受产前和受孕前咨询 血红蛋白病。对于健康专业人员和辅助专业人员， 目的是阐明他们对镰状细胞病及其治疗的认识 以增加他们的知识基础，并改善他们的态度 以及为患者提供护理的行为。对于社区来说，目标是 是为了提高曝光个人的努力的有效性 普通人群对有关血红蛋白特性和疾病的信息以及对 扩大社区对镰刀病研究和项目的支持 通过卫生政策和宣传。最后，对于所有接受服务的人口来说， 其目标是传播有关镰状细胞病的先进知识。 使用教育工具进行研究和临床管理 在语言和文化上都是合适的。目标、方法和 介绍了为实现这些目标而开展的活动。久经考验 教育和咨询活动将继续进行，新的活动将继续 包括：编写关于应对、大家庭支持、压力的材料 对患者、家属和提供者的管理和疼痛管理； 为病人和照顾者提供心理教育小组；以及 成立生物伦理委员会。所有活动都是针对 建立和加强临床医生、研究人员、 患者和家属，以及他们所在的社区。

The mission of the Counseling, Education and Community Outreach projects is to promote, maintain, and restore the health of patients with sickle cell disease and individual with hemoglobinopathy traits through quality education and counseling. The aims are to meet the individual needs of patients and families, health professionals and community audiences and to use quantitative and qualitative methods to evaluate the success of these efforts. The goals of the projects of patients and families are: to provide support to patients with sickle cell disease and their families; to assist them in gaining knowledge and skills that will enable them to better understand and manage the disease; to provide additional advocacy for sickle cell disease research participants; and to provide individuals and couples at-risk with prenatal and pre conceptual counseling about hemoglobinopathies. For health professionals and paraprofessionals, the goal is to elucidate them about sickle cell disease and its management in order to increase their knowledge base and also to improve their attitudes and behaviors in providing care to patients. For the community, the goals are to improve the effectiveness of efforts to expose individuals in the general population to information on hemoglobin traits and disease and to broaden community support for sickle ell disease research and programs through health policy and advocacy. Finally, for all populations served, the goal is to disseminate advanced knowledge about sickle cell disease research and clinical management using educational tools which are linguistically and culturally appropriate. Objectives, methods and activities towards accomplishing these goals are presented. Proven educational and counseling activities will continue and new activities include: developing materials on coping, extended family support, stress management and pain management for patients, families and providers; offering psychoeducational groups for patients and caregivers; and establishing a bioethics committee. All activities are directed at building and strengthening the partnership among clinicians, researchers, patients and families, and the communities of which they are a part.