PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE TO PROMOTE POSITIVE OUTCOMES

针对镰状细胞病患者的计划可促进积极成果

• 批准号: 6324736
• 负责人: ROSE M PETERSON
• 金额: $ 9.4万
• 依托单位: UNIVERSITY OF SOUTH ALABAMA
• 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/6324736
• 关键词: blood disorder diagnosis; community health services; counseling; data collection; disease /disorder prevention /control; education evaluation /planning; health education; mass screening; model design /development; patient /disease registry; quality of life; sickle cell anemia; social support network; vocational rehabilitation; workshop

(Adapted from the Applicant's Abstract) The attitude of the community plays an important role in how children and adults with a chronic illness live is normally as possible. Although have sickle cell disease does not affect an individual intellectually, many are not given the opportunities that most take for granted. The investigators have identified six objectives which can have major implications for individuals with sickle cell disease the next five years. Objective I: Program Evaluations- To continue to enhance and expand education, screening, counseling and supportive services through systematic program evaluations. Collection of data will occur as an ongoing process. Utilization of an organized system of evaluation program data to design or redesign program components will maximize the use of community resources. Objective II: Sickle Cell Educator/Counselor Training and Certification Program- To provide education and training about sickle cell disease to health care providers and other individuals working in the field of sickle cell disease. Objective III: Case Management Intervention For Persons with Sickle Cell Disease - To ensure that persons with sickle cell disease within the community based program's service area have access to the full array of medical, social, educational and community services. The core elements of the case management program will consist of client assessment, care/services plan development/ linking/coordination of services, client advocacy, and reassessment/follow-up. Objective IV: Preventive Care Program for Persons with Sickle Cell Disease (PCP) - To expand the existing education model to facilitate an increased quality of life for clients with clients with sickle cell disease through the provision of educational seminars (PCP). Objective V: Individuals at Risk: A Comprehensive Educational Program for Sickle Cell Disease and Trait- To expand and enhance the existing prenatal education program on new born screening for sickle cell disease at existing sites and to develop a program for counties currently under served. Objective VI: Tutorial and Career Development Program for Students with Sickle Cell Disease - To function as a tutorial program for school age clients with sickle cell disease registered with the community based program by providing homework assistance during the academic school term. The goal is to create an environment that fosters increased self-esteem as students develop good study skills.

（改编自申请人的摘要）社区的态度 在患有慢性疾病的儿童和成人中发挥着重要作用 通常情况下，住是尽可能的。虽然患有镰状细胞病并不 影响一个人的智力，许多人没有机会 大多数人认为这是理所当然的。调查人员已确定六 可能对镰状细胞病患者产生重大影响的目标 未来五年的细胞疾病。目标 I：计划评估 - 至 继续加强和扩大教育、筛查、咨询和 通过系统的计划评估提供支持服务。收藏 数据将作为一个持续的过程出现。利用有组织的系统 用于设计或重新设计项目组成部分的评估项目数据将 最大限度地利用社区资源。目标 II：镰状细胞 教育者/辅导员培训和认证计划-提供 向医疗保健提供者提供有关镰状细胞病的教育和培训 以及从事镰状细胞病领域工作的其他个人。 目标 III：镰状细胞病患者的病例管理干预 疾病 - 确保患有镰状细胞病的人在 基于社区的计划的服务区域可以访问全部 医疗、社会、教育和社区服务。的核心要素 案例管理计划将包括客户评估， 护理/服务计划的制定/服务的链接/协调，客户 宣传和重新评估/后续行动。目标 IV：预防保健 镰状细胞病患者 (PCP) 计划 - 扩大 现有的教育模式有利于提高人们的生活质量 通过提供患有镰状细胞病的客户 教育研讨会（PCP）。目标 V：面临风险的个人：A 镰状细胞病和性状综合教育计划 扩大和加强现有的新生儿产前教育计划 在现有地点筛查镰状细胞病并制定 目前正在服务的县的计划。目标 VI：教程和 镰状细胞病学生职业发展计划 - To 作为镰状细胞学龄患者的辅导计划 通过提供家庭作业在社区计划中登记疾病 学术学期期间的协助。目标是创建一个 在学生良好发展的过程中培养增强自尊的环境 学习技巧。