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

镰状细胞贫血症婴儿的产前教育和随访

• 批准号: 5213657
• 负责人: Yih-Ming Yang
• 金额: --
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/5213657
• 关键词: anxiety; blood disorder diagnosis; community health services; comprehensive care; disease /disorder prevention /control; emotional adjustment; female; health education; hemoglobin C; human subject; infant human (0-1 year); longitudinal human study; mass screening; mother /infant health care; penicillins; pregnancy; psychological tests; questionnaires; sickle cell anemia; social support network; stress

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.

良好的后续行动对于提供健康监测至关重要， 为婴儿提供青霉素预防、医疗和支助服务 镰状细胞病患者，并且对于提供咨询至关重要 对患有镰状细胞性状和血红蛋白病的婴儿进行家庭检测 特质 然而，对婴儿的随访确定为有镰刀， 在许多新生儿中， 筛选程序。 婴儿的初始和长期随访 疾病可以通过基于社区项目的随访网络得到改善 和病人跟踪系统，以确保提供全面的护理 给每一个镰状细胞病患者。 婴儿随访率 当母亲的病情好转时， 了解新生儿镰状细胞的意义和重要性 筛选 焦虑和情绪压力与初始 当母亲在怀孕期间， 更了解筛查的目的。 长期随访 网络和病人跟踪系统将建立和集中在 社区项目，镰状细胞协会，墨西哥湾沿岸，亚拉巴马， 为了确保所有患病婴儿，1）获得最佳的 综合医疗护理; 2）每日预防性服用青霉素;以及 3)获得适当的社会情感支持和医疗保险。 新生儿镰状细胞筛查的教育将纳入一项 为参加产前教育的孕妇提供持续的产前教育; 产前诊所。 将对母亲进行前后测试， 评估他们对新生儿镰状细胞筛查的知识。 母亲 参加咨询会议的镰状细胞性状婴儿将 给予前后测试和“状态-特质焦虑量表”，以评估 他们的焦虑水平。 无疾病或特征婴儿的母亲 参加居民连续性的健康维护访问 美国儿童医学中心的诊所将进行预测试， 焦虑筛查 这些母亲将作为焦虑的控制者 水平和一般知识的镰状细胞性状和疾病。 的 将对患有疾病和特征的婴儿的随访率进行比较， 接受过产前教育的母亲和没有接受过产前教育的母亲。 关于新生儿镰状细胞病的产前教育示范方案， 将编制教育材料。 新生儿产前教育 镰状细胞病的筛查将被引入， 在产前诊所进行产前教育。