CORE--COUNSELING, EDUCATION AND COMMUNITY OUTREACH

核心——咨询、教育和社区外展

• 批准号: 6325904
• 负责人: Marsha J Treadwell
• 金额: $ 23.29万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2000
• 资助国家: 美国
• 起止时间: 2000-04-01 至 2001-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6325904
• 关键词: biomedical facility; data management; genetic counseling; health care personnel education; health education; human subject; longitudinal human study; medical outreach /case finding; sickle cell anemia

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.

咨询、教育和社区外展项目的使命 是为了促进、维持和恢复镰状细胞病患者的健康 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。目的是满足个人的需求 患者和家属、卫生专业人员和社区受众，并 使用定量和定性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人提供支持； 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 对于镰状细胞病研究参与者；并为个人提供 以及有风险的夫妇接受产前和概念前咨询 血红蛋白病。对于卫生专业人员和辅助专业人员来说， 目标是向他们阐明镰状细胞病及其治疗 为了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，目标 是为了提高揭露个人的努力的有效性 向一般人群提供有关血红蛋白特征和疾病的信息，并 扩大社区对镰状细胞病研究和计划的支持 通过卫生政策和宣传。最后，对于所有服务人群来说， 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 语言和文化上适当。目标、方法和 介绍了实现这些目标的活动。已证实 教育和咨询活动将继续进行，新的活动将继续 包括：开发有关应对、大家庭支持、压力的材料 患者、家属和提供者的管理和疼痛管理； 为患者和护理人员提供心理教育小组；和 设立生物伦理委员会。所有活动均针对 建立和加强临床医生、研究人员、 患者和家庭以及他们所属的社区。