Live liver donors' information needs: A qualitative study of practical implications for informed consent.

Live liver donors' information needs: A qualitative study of practical implications for informed consent.
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活肝捐赠者的信息需求:对知情同意的实际影响的定性研究。

DOI:
10.1016/j.surg.2016.04.022
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发表时间:
2016-09
期刊:
影响因子:
3.8
通讯作者:
Baker T
Baker T
中科院分区:
医学2区
文献类型:
--
作者:
Gordon EJ;Mullee J;Skaro A;Baker T

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随着活体肝移植越来越多地用于扩大供体库,人们仍然担心如何确保活体肝供体的知情同意。本研究评估了捐赠者的信息偏好和知情同意的看法。在2011年11月至2012年4月期间,通过电话对捐赠者进行了认知访谈,了解新调查工具中的知识项目对知情同意的重要性。采用专题分析法对定性数据进行分析,直至达到饱和。29名肝脏供体参与(参与率为85%)。捐助者普遍报告说,无法理解或保留教育期间披露的许多信息。捐赠者更喜欢关于主要捐赠风险的信息,例如,死亡,以及可能影响其日常生活的轻微风险,例如,伤口感染捐助者对有关其权利、保密性或医疗程序的信息不太感兴趣。捐助者对统计资料的偏好各不相同。许多人认为风险信息披露过多,并将认为不常见或不严重的风险合理化。捐赠者对捐赠后短暂的住院时间感到失望。我们的研究结果表明,在评价过程中披露的信息的复杂性和数量是捐助者难以充分理解。捐助者对并发症的严重性缺乏认识,可能会损害他们提供知情同意的能力。未来的研究应开发有效的信息传递方法,以加强知情同意。
As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding ensuring live liver donors' informed consent. This study assessed donors' information preferences and perceptions of informed consent. Cognitive interviews were conducted with donors by telephone about how knowledge items in a new survey instrument were material to informed consent, between November 2011 and April 2012. Thematic analysis was used to analyze qualitative data until reaching saturation. Twenty-nine liver donors participated (85% participation rate). Donors commonly reported being unable to understand or retain much information disclosed during education. Donors preferred information about major donation risks, e.g., death, and minor risks that would likely affect their daily lives, e.g., wound infection. Donors expressed less interest in information about their rights, confidentiality, or the medical procedure. Donors' preferences varied regarding statistical information. Many perceived the disclosure of risk information to be excessive, and rationalized risks believed to be uncommon or not serious. Donors were disappointed by the brevity of the post-donation hospital stay. Our findings suggest that the complexity and volume of disclosed information during evaluation was difficult for donors to adequately comprehend. Donors' lack of appreciation for the seriousness of complications may undermine their ability to provide informed consent. Future research should develop effective information delivery methods to enhance informed consent.