Working together: experiences of people with aphasia as co-researchers in participatory health research studies

Abstract

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.