CORE--COUNSELING PROGRAM

咨询计划的最终目标是教育和支持 个人对文化遗产的意义和继承 通过以下教育消除人们对血红蛋白疾病的误解 专业人士和非专业人士社区。该计划的中期目标 咨询方案是：帮助患有血红蛋白疾病的个人和 他们的家人为了更好地理解和应对他们的疾病；咨询 有血红蛋白特征的人，以纠正误解，减少 焦虑；促进对高危夫妇的早期识别并促进 关于生殖选择的知情决策；教育 通过外展活动，专业和非专业社区，镰刀 细胞教育者/辅导员。培训和认证计划，以及 编写教育材料；并有助于理解 通过研究活动了解血红蛋白疾病的影响。AS 在北加州综合镰刀细胞中心演示 资助建议和进展报告，血红蛋白病的需要 先进的诊断技术有效地满足了患者的需求 治疗，没有遗传顾问提供持续的咨询 这些病人和他们的家人。在我们的绳索取得成功后 血液筛查程序作为确定婴儿是否患有血红蛋白的一种手段 疾病，加利福尼亚州的所有婴儿现在都在接受筛查 用于治疗血红蛋白疾病。我中心是国家参照系 实验室，还提供后续护理、咨询和检测 对于被确认患有血红蛋白疾病的婴儿以及 加利福尼亚州北部具有血红蛋白特征的婴儿家庭。 产前筛查，也通过我们的检测中心，已被证明是一种 识别高危夫妇和更多夫妇的有效手段是 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的需求 鉴于这一领域正在取得的进步。我们建议 继续如上所述向家庭提供咨询服务， 并通过研究提高我们咨询计划的有效性 其目的是：找出服务利用的障碍； 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；并加强 处理复杂咨询的咨询方案的制定 向具有以下条件的个人提供服务时出现的问题 血红蛋白变体及其家族。

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.