F18大流行期间使用人种学探索hd社会认知的伦理问题

A. Fisher, Anna Lavis, H. Rickards, S. Greenfield
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引用次数: 0

摘要

目的利用民族志通过HD患者的社会功能来研究社会认知,将开始从HD患者及其同伴的角度解决我们对HD患者日常生活认识的经验差距。随着人种学进入现实生活的混乱,研究人员是参与者在他们自己的空间里的观察者,现在需要包括Covid安全策略(即在线观察),由于HD的性质以及远程探索互动的亲密性,各方面临的风险可能会更大。“不伤害”的原则必须放在首位。方法虽然我们的恐惧通常不会成真,但研究人员使用这种方法研究HD患者及其同伴时需要考虑:让患者参与小组参与在项目的整个生命周期和之后在社区中建立信任和融洽关系家庭动态可能因大流行而恶化的紧张关系窘迫策略调整我们作为研究人员的工作方式,而不是相反给予更多的结构,规划和提示优化HD参与流动重新审查同意获取技术技术在这一人群中的局限性经过深思熟虑的准备虽然耗时,但可能使所有感兴趣的参与者公平获得,但也降低了风险。正如马卡姆所说,方法=道德。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
F18 The ethics of exploring social cognition in hd using ethnography during a pandemic
Aim Using ethnography to study social cognition through social functioning in HD will begin to address the empirical gap in our knowledge of everyday life with HD from the perspective of both people with HD and their companions. As ethnography moves into the messiness of real life in that the researcher is an observer of the participants in their own space and this now needs to include Covid safe strategies (i.e. online observation) risks to all parties may be seen as greater due to the nature of HD alongside exploring the intimacies of interaction remotely. Primacy needs to be given to the principle of ‘do no harm’. Method Whilst our fears often do not come to fruition, researchers using this methodology with people with HD and their companions need to consider: Involving a patient participant group Building trust and rapport amongst the community through the life of the project and beyond Family dynamics Tensions which may have been worsened by the pandemic A distress strategy Adjusting the way we as researchers do things and not the other way round Giving more structure, planning and prompting to optimise HD engagement Fluid revisiting of consent Access to technology The limitations of technology in this population Outcome Thoughtful preparation although time consuming may enable equitable access to all interested participants but also reduce risks. As Markham notes methods = ethics.
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