'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource
'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource
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DOI：
10.1111/j.1369-7625.2007.00455.x
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发表时间：
2007-12-01
影响因子：
3.2
通讯作者：
Hewison, Jenny
中科院分区：
文献类型：
--
作者：
Ahmed, Shenaz;Bryant, Louise;Hewison, Jenny
目的：产前筛查网络资源旨在根据残疾人及其家人的证词，通过提供关于残疾的平衡信息，支持知情的产前检测选择。我们受开发商委托对网站进行独立评估。本研究的重点是参与者如何评价AnSWeR在提供平衡信息方面的作用。研究地点：西约克郡。参与者：共有69人来自三个群体：健康专业人员，有测试条件个人经验的人（唐氏综合症，囊性纤维化和脊柱裂）和代表资源的潜在用户的人。方法：数据收集通过焦点小组和电子questionnaire.Results：与会者认为，有关生活的经验与测试的条件和终止妊娠的条件的信息是很重要的，以支持知情的产前检查和终止决定。然而，关于测试条件的信息是否平衡，存在意见分歧。有些人认为，包括与测试条件的人的照片引入偏见（积极和消极的）。许多与会者还认为，AnSWeR提出的信息不足终止受影响的怀孕，以支持知情choice.Conclusion：这项研究强调了设计的困难“平衡”的信息测试的条件和缺乏这样做的方法。据建议，AnSWeR目前提供了一个平衡其他网站，侧重于残疾的医疗方面。增加网站上提供的案例研究的数量和范围将有助于实现其提供“平衡”信息的目标。
Objectives: The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information.Settings: West Yorkshire.Participants: A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (Down's syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource.Method: Data were collected via focus groups and electronic questionnaires.Results: Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice.Conclusion: This study highlighted the difficulty of designing 'balanced' information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide 'balanced' information would be aided by increasing the number and range of case studies available on the website.