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供体受孕工具的阿尔法测试,以增强父母的告知和沟通。

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking.

出版信息

J Obstet Gynecol Neonatal Nurs. 2022 Sep;51(5):536-547. doi: 10.1016/j.jogn.2022.06.039. Epub 2022 Jul 31.

Abstract

OBJECTIVE

To conduct an alpha test of the prototype of a digital decision aid to help parents disclose donor conception to their children, the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool).

DESIGN

Convergent mixed-methods design.

SETTING

Virtual interviews in places convenient to the participants.

PARTICIPANTS

A purposeful sample (N = 16) of nine gamete-donor and embryo-recipient parents and eight clinicians, as one parent was also a clinician.

METHODS

We conducted cognitive interviews to explore participants' perceptions about the TELL Tool prototype and observe patterns of use. The International Patient Decision Aid Standards (i.e., usability, comprehensibility, and acceptability) guided the development of the qualitative interview guide and directed the qualitative analysis. We also collected data about participants' perceptions and ratings of the helpfulness of each of the prototype's webpages regarding parents' decision making about disclosure. Descriptive statistics were used to analyze the helpfulness ratings before we merged the two data sets to optimize understanding.

RESULTS

Participants reported that the TELL Tool was a helpful digital decision aid to help parents tell their children how they were conceived. Most (93.7%) webpage rating scores indicated that the content was very helpful or helpful. The participants identified content and technical areas that needed refinement and provided specific recommendations such as adding concise instructions (usability), tailoring adolescent language (comprehensibility), and softening verbiage (acceptability).

CONCLUSION

Alpha testing guided by the International Patient Decision Aid standards was an essential step in refining and improving the TELL Tool prototype before beta testing.

摘要

目的

对帮助父母向孩子透露供精受孕信息的数字决策辅助工具原型——赋予父母披露和交流意愿的供精受孕工具(TELL 工具)进行 alpha 测试。

设计

汇聚式混合方法设计。

地点

参与者方便的虚拟访谈。

参与者

目的抽样(N=16)包括 9 名配子供者和胚胎受者父母,以及 8 名临床医生,因为其中一位父母也是临床医生。

方法

我们进行了认知访谈,以探索参与者对 TELL 工具原型的看法并观察使用模式。国际患者决策辅助工具标准(即可用性、可理解性和可接受性)指导了定性访谈指南的制定,并指导了定性分析。我们还收集了参与者对原型网页在父母关于披露决策方面的有用性的看法和评价数据。在合并两个数据集以优化理解之前,我们使用描述性统计来分析有用性评分。

结果

参与者报告称,TELL 工具是一种帮助父母告知孩子受孕方式的有用数字决策辅助工具。大多数(93.7%)网页评分表明内容非常有帮助或有帮助。参与者确定了需要改进的内容和技术领域,并提供了具体建议,如添加简明说明(可用性)、调整青少年语言(可理解性)以及软化措辞(可接受性)。

结论

在 beta 测试之前,以国际患者决策辅助工具标准为指导的 alpha 测试是改进和完善 TELL 工具原型的重要步骤。

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本文引用的文献

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Parents' experiences telling children conceived by gamete and embryo donation about their genetic origins.
F S Rep. 2021 Nov 19;2(4):479-486. doi: 10.1016/j.xfre.2021.08.002. eCollection 2021 Dec.
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Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration.
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Hum Fertil (Camb). 2021 Feb;24(1):31-45. doi: 10.1080/14647273.2019.1567945. Epub 2019 Feb 6.
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