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， 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 特征。 然而，对确诊患有镰刀病的婴儿的随访 许多新生儿的细胞疾病或性状并不令人满意 筛选计划。 婴儿的初始和长期随访 疾病可以通过基于社区计划的后续网络得到改善 和患者跟踪系统，确保提供全面的护理 献给每一位镰状细胞病患者。 婴儿随访率 当母亲病情好转时，患有疾病或性状的疾病可以得到改善 了解新生儿镰状细胞的意义和重要性 筛选。 与初始相关的焦虑和情绪压力 当母亲们可以时，可以减少筛查结果的通知 更加清楚筛查的目的。 长期跟踪 将建立网络和患者跟踪系统并集中在 社区计划，镰状细胞协会，阿拉巴马州墨西哥湾沿岸， 确保所有患病婴儿能够：1) 获得最佳治疗 全面的医疗护理； 2）每日预防性服用青霉素；和 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教育将纳入 为参加的孕妇提供持续的产前教育课程 产前诊所。 将对母亲进行事前和事后测试 评估他们对新生儿镰状细胞筛查的了解。 母亲们 参加咨询课程的患有镰状细胞特征的婴儿将 进行前后测试以及“状态特质焦虑量表”来评估 他们的焦虑程度。 无疾病或特征的婴儿的母亲 参加居民连续性健康维护访问 美国儿童医学中心诊所将进行预测试， 焦虑筛查。 这些母亲将成为焦虑的控制者 有关镰状细胞性状和疾病的水平和常识。 这 将比较患有疾病和性状的婴儿的随访率 接受过胎教的妈妈和没有接受过胎教的妈妈。 新生儿镰状细胞病示范产前教育计划 将开发教育材料。 新生儿胎教 镰状细胞病筛查将成为其中的一部分 产前诊所的产前教育。