PRENATAL EDUCATION AND FOLLOW-UP OF INFANTS WITH SICKLE CELL ANEMIA

良好的后续行动对提供健康监测至关重要， 婴儿青霉素预防、医疗护理和支持服务 患有镰状细胞病，对于提供咨询是必不可少的 对有镰状细胞特征和血红蛋白病的婴儿进行家庭检测 特质。然而，对被确认为患有镰刀的婴儿的随访 在许多新生儿中，细胞疾病或特征并不令人满意 筛选计划。婴幼儿慢性阻塞性肺疾病的早期和长期随访 疾病可以通过以社区计划为基础的后续网络来改善 和患者跟踪系统，确保提供全面的护理 给每一位患有镰状细胞病的患者。婴儿随访率 当母亲病情好转时，有疾病或特征的人就会得到改善 了解新生儿镰状细胞的意义和重要性 放映。焦虑和情绪压力与最初的 筛查结果的通知可以在母亲 更清楚地认识到筛查的目的。长期随访 将建立网络和患者跟踪系统，并以 社区项目，阿拉巴马州墨西哥湾沿岸的镰刀细胞协会， 为了确保所有患有疾病的婴儿都能得到最好的治疗 全面的医疗护理；2)每日服用预防性青霉素； 3)获得适当的社会情感支持和医疗保险。 关于新生儿镰状细胞筛查的教育将纳入一项 为参加的准妈妈提供持续的产前教育课程 产前诊所。将对母亲进行前后测试，以 评估他们对新生儿镰状细胞筛查的知识。母亲们 有镰状细胞特征的婴儿参加咨询会议的比例将是 在前测和后测的基础上，使用“状态-特质焦虑问卷”进行评估 他们的焦虑程度。没有疾病或特征的婴儿的母亲 在驻地连续性医院参加健康维护探视 美国儿童医学中心的诊所将进行预测试， 焦虑症筛查。这些母亲将成为焦虑的控制者。 关于镰状细胞特性和疾病的水平和常识。这个 有疾病和性格的婴儿的随访率将与 接受过产前教育的母亲和没有接受过产前教育的母亲。 新生儿镰状细胞病产前教育示范计划 将开发教育材料。浅谈新生儿的产前教育 镰状细胞疾病筛查将被引入成为 产前诊所的产前教育。

Good follow-up is vital for the provision of health surveillance, penicillin prophylaxis, medical care and supportive service for infants with sickle cell disease and is essential for the provision of counseling and family testing to infants with sickle cell trait and hemoglobinopathy trait. However, the follow-up for infants identified as having sickle cell disease or trait has been less than satisfactory in many newborn screening programs. Initial and long-term follow-up of infants with disease can be improved by a community program-based follow-up network and patient tracking system to ensure the provision of comprehensive care to every patient with sickle cell disease. Follow-up rate of infants with disease or trait can be improved when the mothers are better informed about the significance and importance of newborn sickle cell screening. Anxiety and emotional stress associated with initial notification of screening results can be reduced when the mothers are more aware of the purpose for the screening. A long-term follow-up network and patient tracking system will be established and centered in the community program, the Sickle Cell Association, Gulf Coast, Alabama, to assure that all infants with disease will, 1) receive optimal comprehensive medical care; 2) take daily prophylactic penicillin; and 3) receive appropriate social-emotional support and medical coverage. Education on newborn sickle cell screening will be incorporated into an ongoing prenatal education session for the expecting mothers who attend prenatal clinic. A pre- and post-test will be given to the mother to evaluate their knowledge on the newborn sickle cell screening. Mothers of infants with sickle cell trait attending counseling session will be given pre-and post-tests and a "State-Trait Anxiety Inventory" to assess their anxiety level. Mothers of infants without disease or trait attending for a health maintenance visit at the Resident Continuity Clinics in USA Children's Medical Center will be given pre-test and the anxiety screening. These mothers will serve as the control for anxiety level and general knowledge about sickle cell trait and disease. The follow-up rate of infants with disease and trait will be compared between the mothers who have received prenatal education and those who have not. A model prenatal education program on newborn sickle cell disease and educational material will be developed. Prenatal education on newborn screening for sickle cell disease will be introduced to become part of prenatal education in prenatal clinics.