Davis Terry C, Humiston Sharon G, Arnold Connie L, Bocchini Joseph A, Bass Pat F, Kennen Estela M, Bocchini Anna, Kyler Penny, Lloyd-Puryear Michele
Department of Pediatrics, Louisiana State University Health Sciences Center, Shreveport, LA 71130, USA.
Pediatrics. 2006 May;117(5 Pt 2):S326-40. doi: 10.1542/peds.2005-2633M.
The aims of this study were to determine parent and provider knowledge and awareness of newborn screening; to gather opinions from parents, providers, and newborn screening professionals about the content and timing of newborn screening education; and to use consensus data to formulate recommendations and to develop educational materials for parents and providers.
We conducted 22 focus groups and 3 individual interviews between October 2003 and May 2004, with English- and Spanish-speaking parents of infants <1 year of age who had experience with initial testing, retesting, or false-positive screenings; health professionals who provide prenatal care or health care for newborns; and state newborn screening program health professionals.
Parents and providers had limited knowledge and awareness about newborn screening practices. Parents wanted brief to-the-point information on newborn screening and its benefits, including the possible need for retesting and the importance of returning promptly for retesting if initial results are abnormal. Parents wanted the information orally from the primary care provider. Parents, providers, and newborn screening professionals all thought that an accompanying concise, easy-to-read brochure with contact information would be helpful. All focus group participants thought that parents should receive this information before the birth of the infant, preferably in the third trimester of pregnancy. Providers wanted a brief checklist of information and resources to prepare them to educate parents effectively.
We recommend prenatal and primary care providers be more involved in educating parents about newborn screening. Professional societies and state health officials should work together to encourage parent and provider education. User-friendly patient and provider education materials, such as those we developed, could form the basis for this educational approach.
本研究的目的是确定家长和医疗服务提供者对新生儿筛查的知识和认识；收集家长、医疗服务提供者和新生儿筛查专业人员对新生儿筛查教育内容和时机的意见；利用共识数据制定建议，并为家长和医疗服务提供者开发教育材料。
在2003年10月至2004年5月期间，我们进行了22次焦点小组讨论和3次个人访谈，对象包括讲英语和西班牙语、其1岁以下婴儿有初次检测、复查或假阳性筛查经历的家长；提供产前护理或新生儿保健服务的卫生专业人员；以及州新生儿筛查项目的卫生专业人员。
家长和医疗服务提供者对新生儿筛查实践的知识和认识有限。家长希望获得关于新生儿筛查及其益处的简短、切中要害的信息，包括可能需要复查以及如果初次结果异常应及时返回进行复查的重要性。家长希望从初级保健提供者那里以口头形式获得这些信息。家长、医疗服务提供者和新生儿筛查专业人员都认为，一份附带联系信息的简洁、易读的手册会有所帮助。所有焦点小组参与者都认为家长应在婴儿出生前，最好在怀孕晚期获得此信息。医疗服务提供者希望有一份简短的信息和资源清单，以便为他们有效地教育家长做好准备。
我们建议产前和初级保健提供者更多地参与对家长进行新生儿筛查教育。专业协会和州卫生官员应共同努力，鼓励对家长和医疗服务提供者进行教育。像我们开发的这类方便用户的患者和医疗服务提供者教育材料，可以构成这种教育方法的基础。
