Maternity Care Providers' Experiences with Providing Information on Newborn Bloodspot Screening During Pregnancy: A Dutch Survey Study.

IF 4 Q1 GENETICS & HEREDITY
Jasmijn E Klapwijk, Janneke Gitsels-van der Wal, Linda Martin, Rendelien K Verschoof-Puite, Ellen Elsinghorst, Lidewij Henneman
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Abstract

Newborn bloodspot screening (NBS) aims to detect treatable disorders in newborns to offer early interventions. According to the official Dutch national NBS guidance, parents in the Netherlands should be informed about NBS during pregnancy by maternity care providers (MCPs), providing two leaflets and oral information. This study investigated what, how, and when information about NBS is given during pregnancy according to Dutch MCPs. An online questionnaire was completed by 279 MCPs; 237 (84.9%) provided information to parents themselves, although 4.6% of them only did so postnatally, and 240 (86.0%) considered this the task of the MCP. Among the 237 MCPs, information was provided by personal conversation (59.9%) and by giving at least one leaflet (83.1%), while 25.7% only gave leaflets. Being a first pregnancy (45.1%) and parents' literacy (38.8%) influenced how MCPs provided information. Information was mostly provided at 34-37 weeks gestation (68.8%). Conversations mostly included giving information on when NBS will be performed (97.2%), the purpose of NBS (93.7%), how the test will be performed (92.3%), and participation being voluntary (80.3%). The results suggest that while most Dutch MCPs consider it their task to provide NBS information, its timing, method, and completeness do not always follow the established guidelines.

产科护理提供者在怀孕期间提供新生儿血斑筛查信息的经验:一项荷兰调查研究。
新生儿血斑筛查(NBS)旨在发现新生儿可治疗的疾病,提供早期干预。根据荷兰国家统计局的官方指导,荷兰的父母应该在怀孕期间由产科保健提供者(mcp)告知NBS,提供两份传单和口头信息。这项研究调查了荷兰mcp在怀孕期间提供NBS信息的内容、方式和时间。279名mcp完成了一份在线问卷;237人(84.9%)向父母本人提供信息,但其中4.6%的人只在出生后才这样做,240人(86.0%)认为这是MCP的任务。在237名mcp中,个人谈话(59.9%)和发放至少一张传单(83.1%)的方式提供信息,而25.7%的人只发放传单。第一次怀孕(45.1%)和父母的文化程度(38.8%)影响mcp提供信息的方式。孕34 ~ 37周提供的信息最多(68.8%)。谈话内容主要包括:何时进行国家统计局(97.2%)、国家统计局的目的(93.7%)、如何进行测试(92.3%)、自愿参与(80.3%)。结果表明,虽然大多数荷兰mcp认为提供NBS信息是他们的任务,但其时间、方法和完整性并不总是遵循既定的指导方针。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
International Journal of Neonatal Screening
International Journal of Neonatal Screening Medicine-Pediatrics, Perinatology and Child Health
CiteScore
6.70
自引率
20.00%
发文量
56
审稿时长
11 weeks
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