ABSTRACT

Background: People with aphasia have been engaging with research in a variety of ways. There are few descriptions of how they are involved in participatory research methodologies and even fewer reports describe their perspective on participating as co-researchers.

Aims: To explore the experiences and reflections of two people with aphasia, BG and MG, on being involved in participatory research studies as co-researchers – the Conversation Partner Programme Evaluation Project and the Friendship and Aphasia Project.

Methods: Semi-structured interviews were conducted with two people with aphasia about their experiences of engaging in participatory research as co-researchers. Data were analysed thematically.

Outcomes & Results: Retrospective reflection by MG and BG resulted in five interlinked themes:

• Involvement in participatory research processes: “More than a guinea pig”

• Group process: “It’s us not them … completely different”

• Flexibility and creativity: new ways to co-generate and co-analyse data

• Personal transformations and transformative actions arising from the research: “The tortoise wants to be like the hare again”

• Enhancing quality and meaningfulness: “You get more things out of it for more people”

Conclusions: Participatory research methodologies encourage and support non-traditional methods and boundary crossing relationships between academic researchers and people with aphasia. MG and BG’s reflections and recommendations suggest possibilities for enhancing collaboration and equality within our research practices.

摘要

背景：失语症患者一直以各种方式参与研究。关于他们如何参与参与式研究方法的描述很少，甚至更少的报告描述了他们作为共同研究人员参与的观点。

目的：探讨 BG 和 MG 两个失语症患者作为共同研究人员参与参与式研究——对话伙伴计划评估项目和友谊与失语症项目的经验和反思。

方法：对两名失语症患者进行半结构式访谈，了解他们作为共同研究人员参与参与式研究的经历。数据进行了专题分析。

结果和结果： MG 和 BG 的回顾性反思产生了五个相互关联的主题：

• 参与参与式研究过程：“不仅仅是一只豚鼠”

• 小组流程：“是我们不是他们……完全不同”

• 灵活性和创造力：共同生成和共同分析数据的新方法

• 研究产生的个人转变和转变行动：“乌龟想再次像兔子一样”

• 提高质量和意义：“你可以为更多的人获得更多的东西”

结论：参与式研究方法鼓励和支持学术研究人员和失语症患者之间的非传统方法和跨界关系。MG 和 BG 的反思和建议提出了在我们的研究实践中加强合作和平等的可能性。