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产前检查过程中与患者的沟通:一项探索性定性研究。

Communication with patients during the prenatal testing procedure: an explorative qualitative study.

作者信息

van Zwieten Myra, Willems Dick, Knegt Lia, Leschot Nico

机构信息

Academic Medical Center, University of Amsterdam, Division Clinical Methods and Public Health, Department of General Practice, Family Medicine, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands.

出版信息

Patient Educ Couns. 2006 Oct;63(1-2):161-8. doi: 10.1016/j.pec.2005.09.013. Epub 2006 Jan 6.

Abstract

OBJECTIVE

While generally two phases of prenatal genetic counseling are distinguished, i.e. pre- and post-test counseling, we revealed a third form of communication during the testing procedure. The content of this intermediate communication was explored.

METHODS

A secondary analysis was performed on data obtained in another observational study, which was focussed on how indefinite testing results are clarified. Thirteen testing trajectories in which communication with parents took place during the testing procedure were further analysed.

RESULTS

In the majority of cases the content of intermediate communication was similar to the content of pre-test counseling. In four cases the content was different, because the communication involved the parents in decision-making about a testing result, which was still being processed.

CONCLUSION

Communication in (prenatal) genetic testing is not always restricted to separate phases, but can be an ongoing process occurring parallel to, and sometimes even intertwined with, the testing process. The advocated model of shared decision-making might work better once it is determined if the decision concerns the area wherein the provider is the expert, or the patient.

PRACTICE IMPLICATIONS

Further research into the process of continuing decision-making could clarify how providers' and patients' responsibilities regarding the diagnostic process are distributed. Meanwhile, the possible occurrence of continuous decision-making should be mentioned in (prenatal) genetic counseling.

摘要

目的

虽然产前遗传咨询一般分为两个阶段,即检测前和检测后咨询,但我们发现在检测过程中存在第三种沟通形式。对这种中间沟通的内容进行了探究。

方法

对另一项观察性研究中获得的数据进行二次分析,该研究聚焦于如何澄清不确定的检测结果。对在检测过程中与父母进行沟通的13条检测轨迹进行了进一步分析。

结果

在大多数情况下,中间沟通的内容与检测前咨询的内容相似。在4个案例中内容有所不同,因为沟通让父母参与了关于仍在处理中的检测结果的决策。

结论

(产前)基因检测中的沟通并不总是局限于不同阶段,而是可以作为一个与检测过程并行、有时甚至相互交织的持续过程。一旦确定决策涉及提供者是专家的领域还是患者的领域,所倡导的共同决策模式可能会发挥更好的作用。

实践意义

对持续决策过程的进一步研究可以阐明在诊断过程中提供者和患者的责任是如何分配的。同时,在(产前)遗传咨询中应提及持续决策可能出现的情况。

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