• 主题
高级搜索  >
历史搜索 清空历史
首页> 外文期刊>Evidence-based nursing >Oral and written information about newborn screening should be concise and given to parents by primary prenatal care providers
【24h】

Oral and written information about newborn screening should be concise and given to parents by primary prenatal care providers

机译：有关新生儿筛查的口头和书面信息应简明扼要，并由初级产前保健提供者提供给父母

获取原文
获取原文并翻译 | 示例
           
页面导航
  • 摘要
  • 著录项
  • 相似文献
  • 相关主题

摘要

The study by Davis et al was designed in response to the 1999 American Academy of Pediatrics Newborn Screening, Task Force recommendation that research be done on improving patient education about newborn screening for genetic and other disorders.Although 49 of 51 US states and territories had educational pamphlets available, Davis et al performed a qualitative study 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 develop educational materials for parents and providers. This was an ambitious task for this study design. Davis et al acknowledged 3 limitations to their study. Firstly, they used a purposeful sample from 6 US states. Although the sample included a mix of parents, healthcare providers, and newborn screening professionals, it did not represent the US population as a whole. Participants were chosen based on availability of collaborators who could access providers and parents. Secondly, only 3 parents were identified who had received a false positive test result for their infants. Therefore, recommendations from parents about how to deal with such results are limited. Lastly, the individuals conducting the focus groups were also involved in data analysis and had opportunity to bias or influence the results.With a qualitative study design, the next step is to explore the themes developed. Davis et al developed educational materials for parents and healthcare providers despite acknowledgement of the stud/s limitations. Overcoming problems in disseminating materials and maintaining the supportive infrastructure required to deal with test results still needs review. False positive results have increased with mass screening and may cause parental stress and parent-child dysfunction. There are many barriers to good quality provision of educational materials, including a lack of comprehensive quality assurance practices, outsourcing, financial constraints, and perceived communication problems with providers who treat these patients. Professional societies, such as the American Academy of Pediatrics, could be instrumental in making this programme more uniform and streamlined.
机译：戴维斯（Davis）等人的这项研究是针对1999年美国儿科学会新生儿筛查，特别工作组的建议而进行的，该研究旨在改善对遗传和其他疾病的新生儿筛查的患者教育。尽管美国51个州和领地中有49个具有教育Davis等人进行了定性研究，以确定父母和提供者的知识以及对新生儿筛查的认识;收集父母，提供者和新生儿筛查专业人士对新生儿筛查教育的内容和时间的意见;并使用共识数据来制定建议，并为父母和提供者编写教育材料。对于本研究设计而言，这是一项艰巨的任务。戴维斯等人承认他们研究的3个局限性。首先，他们使用了来自美国6个州的有目的的样本。尽管样本包括父母，医疗保健提供者和新生儿筛查专业人员，但它并不代表整个美国人口。根据可以访问提供者和父母的协作者的可用性选择参与者。其次，只有3名父母的婴儿接受了假阳性检测结果。因此，父母对如何处理这种结果的建议是有限的。最后，进行焦点小组讨论的个人也参与了数据分析，并有机会对结果进行偏见或影响。通过定性研究设计，下一步是探索所开发的主题。戴维斯（Davis）等人尽管认识到这种局限性，但仍为父母和医疗保健提供者开发了教育材料。克服传播材料和维护处理测试结果所需的支持性基础结构方面的问题仍然需要进行审查。大规模筛查增加了假阳性结果，并可能导致父母压力和亲子功能障碍。高质量提供教育材料存在许多障碍，包括缺乏全面的质量保证做法，外包，财务限制以及与治疗这些患者的提供者之间的沟通障碍。专业协会，例如美国儿科学会，可能有助于使该计划更加统一和精简。

著录项

相似文献

  • 外文文献
  • 专利
获取原文

客服邮箱：kefu@zhangqiaokeyan.com

京公网安备：11010802029741号 ICP备案号：京ICP备15016152号-6 六维联合信息科技 (北京) 有限公司©版权所有

  • 客服微信

  • 服务号