PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE TO PROMOTE POSITIVE OUTCOMES

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(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.