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: 3736629
• 负责人: YIH-MING YANG
• 金额: --
• 依托单位: UNIVERSITY OF SOUTH ALABAMA
• 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/3736629
• 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， 青霉素预防，医疗和支持婴儿的支持服务 患有镰状细胞疾病，对于提供咨询至关重要 和对具有镰状细胞性状和血红蛋白病的婴儿进行家庭测试 特征。 但是，被确定为镰刀的婴儿的随访 在许多新生儿中，细胞疾病或特征的不满意 筛选程序。 婴儿的初始和长期随访 基于社区计划的后续网络可以改善疾病 和患者跟踪系统以确保提供综合护理 给每个患有镰状细胞疾病的患者。 婴儿的随访率 当母亲更好时，疾病或特征可以改善 得知新生儿镰刀细胞的重要性和重要性 筛选。 与初始相关的焦虑和情绪压力 母亲是筛查结果的通知可以减少 更了解筛选的目的。 长期随访 网络和患者跟踪系统将建立并以中心为中心 社区计划，镰状细胞协会，阿拉巴马州墨西哥湾海岸 确保所有患有疾病的婴儿都将获得最佳 全面的医疗服务； 2）每天服用预防性青霉素；和 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 持续的产前教育会议为参加的预期母亲 产前诊所。 预测试和后测试将向母亲发给 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特质的婴儿将是 进行前测试和“州特征焦虑清单”以评估 他们的焦虑水平。 没有疾病或性状的婴儿母亲 参加居民连续性的健康维护访问 美国儿童医疗中心的诊所将进行预测试和 焦虑筛查。 这些母亲将作为焦虑的控制 有关镰状细胞特征和疾病的水平和一般知识。 这 将比较患有疾病和性状的婴儿的随访率 接受过产前教育的母亲和未接受的母亲。 关于新生儿镰状细胞疾病的模型产前教育计划 将开发教育材料。 新生儿产前教育 将引入镰状细胞疾病的筛查以成为 产前诊所的产前教育。