Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.
Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.
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DOI：
10.1016/j.dhjo.2020.101056
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发表时间：
2021-07
影响因子：
4.5
通讯作者：
Jay GM
中科院分区：
文献类型：
--
作者：
Kalpakjian CZ;Haapala HJ;Ernst SD;Orians BR;Barber ML;Wiseman AL;Mulenga L;Bolde S;Rosenblum S;Jay GM
虽然关于怀孕和残疾的文献越来越多，产生了关于护理障碍和健康风险的重要知识，但关于怀孕决策和信息需求的文献有限。这些知识对于制定干预措施以减轻残疾妇女和保健提供者在做出这一重要决定时面临的挑战至关重要。对身体残疾妇女的怀孕决定和信息需求进行调查。我们开发了一个概念框架，指导项目写作，定义目标人群的特征，让残疾人利益相关者与调查人员合作，并测试项目的可解释性和相关性，以及首选的响应模式（在线与电话）。共有123名女性参与了认知访谈（N = 13），模式测试（N = 10）或调查数据收集（N = 114）。在一轮17次认知访谈中测试了说明、3个筛选问题和156个项目;删除了25个项目，修改了94个项目，保留了37个项目。调查的最后版本包括六个部分：作出决定的经验;关于怀孕和残疾的信息;影响决定的事情;知道什么是重要的;对作出决定的支持;以及与保健提供者的合作。调查的整体表现支持其内容的有效性和实用性，作为一个有用的方式来收集有关怀孕决策的经验和信息需求的身体残疾妇女的信息。
While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision. Develop a survey of pregnancy decisional and informational needs of women with physical disabilities. We developed a conceptual framework that guided item writing, defined the characteristics of the target population, engaged stakeholders with disabilities to collaborate with investigators, and tested the interpretability and relevance of items, and preferred mode of responding (online vs. telephone). A total of 123 women participated in cognitive interviews (N = 13), mode testing (N = 10), or survey data collection (N = 114). Instructions, three screening questions, and 156 items were tested in one round of 17 cognitive interviews; 25 items were deleted, 94 were revised, and 37 items were retained without changes. The final version of the survey included six sub-sections: the experience of making a decision; information about pregnancy and disability; things affecting a decision; knowing what is important; support for making a decision; and working with health care providers. The overall performance of the survey supported its content validity and utility as a useful way to gather information about the pregnancy decision-making experience and informational needs of women with physical disabilities.
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作者：
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通讯作者：
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