Department of Communication, 143 Theatre and Communication, University of Memphis, Memphis, TN 38152, USA.
Qual Health Res. 2010 May;20(5):628-43. doi: 10.1177/1049732310361467. Epub 2010 Feb 12.
In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication. Our goal was to understand how individuals rhetorically constructed agency in discussions of informed consent experiences. After transcribing and coding the focus group interviews, we identified six aspects of agency in participants' discourse: (a) defining roles, (b) seeking information, (c) providing information, (d) supporting others, (e) making decisions, and (f) claiming agency for self. Examining these aspects of agency indicated that efforts to improve the informed consent process must address: (a) status differentials, (b) role definitions, (c) information flow, and (d) relationships.
在本文中，我们研究了在一家儿科研究医院进行的四个焦点小组的讨论，在这些讨论中，我们询问了青少年患者、家长、护士和医生对研究中知情同意过程的看法。自主性是知情同意的目标，这是一个模糊的概念，一些伦理学家质疑它是否能够实现。我们认为，考虑能动性可能更有成效，我们将能动性定义为通过有效沟通构建、协商和维护的语言和行动。我们的目标是了解个人在讨论知情同意经验时如何在修辞上构建能动性。在转录和编码焦点小组访谈后，我们在参与者的话语中确定了能动性的六个方面：(a)定义角色，(b)寻求信息，(c)提供信息，(d)支持他人，(e)做出决策，以及(f)为自己主张能动性。研究这些能动性方面表明，必须解决努力改进知情同意过程的问题：(a)地位差异，(b)角色定义，(c)信息流，以及(d)关系。
