Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality
Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality
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DOI：
10.1111/j.1369-7625.2011.00672.x
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发表时间：
2012-06-01
影响因子：
3.2
通讯作者：
Wyke, Sally
中科院分区：
文献类型：
--
作者：
France, Emma F.;Locock, Louise;Wyke, Sally
背景 对残疾的了解被认为是准父母做出明智的产前筛查决定的关键信息。然而，人们对残疾的经验知识在终止或继续诊断胎儿异常妊娠的决定中的作用知之甚少。目的 探讨准父母对残疾和状况的经验知识在现实生活中决定继续或终止胎儿畸形妊娠时所发挥的作用。设计通过上下文系统框架对定性叙事访谈数据进行二次分析。背景 参与者在英国各地招募，并于 2004 年至 2006 年间接受采访。 参与者 24 名女性及其 4 名男性伴侣，他们有直接或间接的残疾或疾病经历，并且在怀孕期间或结束妊娠时被诊断为胎儿异常。研究结果 大多数受访者都讲述了他们在做出决定时利用他们对残疾的经验知识，无论是未出生婴儿的状况还是其他状况，试图想象未出生的孩子、他们自己和家人的未来。一些正在考虑继续怀孕并且对未出生婴儿的特殊残疾经历很少或没有经历的人，在产前诊断后寻找其他人的经历。父母经验知识的性质并不能预测他们是否继续或终止妊娠。讨论 准父母可能会发现与健康专业人士讨论他们对未出生婴儿状况的现有了解会有所帮助，因为他们知道这可能对父母的决定产生影响。
Background Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. Objective To explore the role that expectant parents experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. Design Secondary analysis of qualitative narrative interview data informed by contextual systems framework. Setting Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. Participants Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. Findings Most respondents recounted using their experiential knowledge of disability, whether of their unborn babys condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn babys specific disability, sought out others experiences of the condition following antenatal diagnosis.The nature of a parents experiential knowledge did not predict whether they continued with or terminated their pregnancy. Discussion Prospective parents may find it helpful to discuss their existing knowledge of their unborn babys condition with health professionals who are aware of the influence this might have on parents decisions.