CORE--EDUCATION PROGRAM

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The aims of our education programs are: A) to provide programs for professionals and para-professionals in Northern California that will improve the level of medical care available for patients with sickle cell disease (SCD) and other hemoglobinopathies; B) to offer scientific seminars and clinical conferences to keep sickle cell center participants abreast of the most recent developments in the field and encourage cross fertilization of ideas; C) to train sickle cell educators and counselors in providing basic information and appropriate follow-up to individuals screened for hemoglobin traits in outlying (prenatal and pediatric) clinics; D) to educate patients who have SCD or other hemoglobinopathies and their families about the nature of their disorder and how to seek medical care appropriately; E) to expose high-school, college and professional students to clinical issues and research in hemoglobinopathies with the hope of inspiring future involvement in the field; F) to produce educational materials to support educational outreach activities and to reinforce verbally presented information; and G) to be involved in community education efforts. Project accomplishments include assessment of the need for education of physicians and nurses about pain management; the success of the counselor/educator training course in raising the knowledge level of participants about SCD, sickle cell trait and other hemobloginopathies; and initiation of research on the importance of awareness by the extended family of information about SCD so that they can provide support to primary caregivers of newly diagnosed patients. Professional, patient and community education needs have been addressed by producing written and audiovisual materials; lecturing at hospitals and health care facilities throughout California; sponsoring "Family education nights"; helping patients to learn about SCD in a camp setting; providing clinical and research experiences for minority high school, college and graduate students; and presenting at health fairs and community organizations. Beyond these activities, we propose to provide more education for physicians and nurses about pain management and evaluate the impact of these efforts; broaden our base of program graduates of the sickle cell counselor/educator course to include more members of ethnic minority groups; design protocols to aid development of single gene counseling training programs; to determine the impact of an enhanced patient education model on family adaptation in families of newly diagnosed patients; develop classes for adolescents and siblings of patients; develop valid, reliable instruments to test knowledge about SCD in participants in our programs; and coordinate educational activities with other sickle cell community and national organizations.