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: 6272795
• 负责人: ROSE M PETERSON
• 金额: $ 9.37万
• 依托单位: UNIVERSITY OF SOUTH ALABAMA
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-04-24 至 1999-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6272795
• 关键词: blood disorder diagnosis; clinical research; community health services; counseling; data collection; disease /disorder prevention /control; education evaluation /planning; health education; human subject; 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.

（根据申请人摘要改编）社会人士的态度 在儿童和成人慢性病患者 生活是尽可能正常的。虽然有镰状细胞病不 影响一个人的智力，许多人没有机会 大多数人认为理所当然的事情。调查人员已经确定了六个 可能对镰刀患者产生重大影响的目标 未来五年的细胞疾病。目标一：方案评价---- 继续加强和扩大教育、筛查、咨询和 通过系统的方案评估提供支持服务。收集 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。目标二：镰状细胞 教育者/辅导员培训和认证计划-提供 向卫生保健提供者提供有关镰状细胞病的教育和培训 和其他在镰状细胞病领域工作的人。 目标三：镰状细胞病患者的病例管理干预 疾病-确保镰状细胞病患者在 基于社区的计划的服务区可以访问全系列的 医疗、社会、教育和社区服务。的核心要素 个案管理计划将包括客户评估， 护理/服务计划制定/联系/协调服务，客户 宣传和重新评估/后续行动。目标四：预防保健 镰状细胞病患者方案-扩大 现有的教育模式，以促进提高生活质量， 为镰状细胞病患者提供 教育研讨会。目标五：面临风险的个人：A 镰状细胞病及其特征的综合教育计划 扩大和加强现有的新生儿产前教育方案; 在现有地点筛查镰状细胞病，并制定一项 目前服务不足的县。目标六：妇女和儿童 镰状细胞病学生职业发展计划-至 作为镰状细胞病学龄患者的辅导计划 通过提供家庭作业， 在学校学术期间提供帮助。目标是创建一个 环境，促进学生发展良好的自尊心增加 学习技能。