CORE--COUNSELING PROGRAM

核心——咨询计划

• 批准号: 6241643
• 负责人: William C. Mentzer
• 金额: $ 26.88万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 1997
• 资助国家: 美国
• 起止时间: 1997-04-01 至 1998-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6241643
• 关键词: behavioral /social science research tag; biomedical facility; child (0-11); coping; counseling; decision making; genetic counseling; health care personnel education; health education; hemoglobinopathy; human subject; infant human (0-1 year); mass screening; medical outreach /case finding; prenatal diagnosis; sickle cell anemia

The ultimate goal of the counseling program is to educate and support individuals regarding the significance and inheritance of the hemoglobinopathies and to ameliorate misconceptions through education of the professional and lay community. The intermediate objectives of the counseling program are to: aid individuals with hemoglobin diseases and their families to better understand and cope with their illness; counsel persons with hemoglobin traits so as to correct misconceptions and reduce anxiety; promote early identification of at-risk couples and facilitate informed decision-making regarding reproductive options; educate the professional and lay community through outreach activities, the Sickle Cell Educator/Counselor. Training and Certification Program, and the preparation of educational materials; and contribute to the understanding of the impact of hemoglobin diseases through research activities. As demonstrated in the Northern California Comprehensive Sickle Cell Center grant proposal and progress report, the needs of hemoglobinopathy patients are being effectively met by advanced diagnostic techniques and treatments, without genetic counselors providing on-going counseling to these patients and their families. Following the success of our cord blood screening program as a means of identifying infants with hemoglobin diseases, all infants in the state of California are now being screened for hemoglobinopathies. Our Center serves as the state reference laboratory and also provides the follow-up care, counseling and testing for infants identified with hemoglobin diseases as well as for the families of infants with hemoglobin traits in northern California. Prenatal screening, also through our testing center, has proven to be an effective means for identifying at-risk couples and more couples are utilizing prenatal diagnostic services. The challenge to counselors is how best to meet the needs of our ethnically diverse patient population in light of the advancements being made in the field. We propose to continue providing counseling services to families as described above, and to increase the efficacy of our counseling program with studies designed to: identify obstacles to the utilization of services; facilitate the further development of the single gene counseling model; assess cultural influences on the genetic counseling process; and enhance the development of counseling protocols to handle the complex counseling issues that arise when providing services to individuals who have hemoglobin variants and their families.

辅导计划的最终目标是教育和支持 个人关于的意义和继承的 血红蛋白病和改善误解，通过教育， 专业人士和非专业人士。 中期目标 咨询计划是：帮助患有血红蛋白疾病的个人， 他们的家人更好地了解和科普他们的疾病;咨询 血红蛋白性状的人，以纠正误解，减少 焦虑;促进早期识别有风险的夫妇， 关于生殖选择的知情决策;教育 通过外展活动， 细胞教育者/顾问。 培训和认证计划，以及 编写教育材料;并促进了解 通过研究活动了解血红蛋白疾病的影响。 作为 在北方加州综合镰状细胞中心展示 基金建议和进展报告，血红蛋白病的需求 先进的诊断技术正在有效地满足患者的需求， 治疗，没有遗传咨询师提供持续的咨询， 这些病人和他们的家人。 随着我们的脐带成功 血液筛查计划作为识别婴儿血红蛋白的一种手段 疾病，加州州的所有婴儿现在都在接受筛查 血红蛋白病 我们的中心作为国家参考 实验室，并提供后续护理，咨询和测试 对于患有血红蛋白疾病的婴儿以及 北方加州有血红蛋白特征的婴儿家庭。 产前筛查，也通过我们的测试中心，已被证明是一个 识别高危夫妇和更多夫妇的有效方法 利用产前诊断服务。 辅导员面临的挑战是 如何最好地满足我们不同种族患者群体的需求 鉴于这一领域的进步 我们建议 继续向上述家庭提供咨询服务， 并通过研究来提高我们咨询项目的效率， 旨在：查明利用服务的障碍; 促进单基因咨询模式的进一步发展; 评估文化对遗传咨询过程的影响; 制定咨询协议，以处理复杂的咨询 在向有以下情况的个人提供服务时出现的问题： 血红蛋白变体及其家族。