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

• Published in: Aphasiology Vol. ahead-of-print; no. ahead-of-print; pp. 1 - 22
• Main Authors: McMenamin, Ruth, Griffin, Michael, Grzybowska, Basia, Pound, Carole
• Format: Journal Article
• Language: English
• Published: Routledge 08-08-2021
• Subjects: Aphasia; co-production; co-researchers; consumer involvement; group process; insider perspectives; participatory research; public and patient involvement (PPI)
• ISSN: 0268-7038; 1464-5041
• DOI: 10.1080/02687038.2021.1923948

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.