Background Patient and Public Involvement (PPI) is the active partnership between researchers and patients. PPI in stroke aphasia research aims to ensure equal opportunities for informed decision-making and guarantee democratic representation in citizen control of PPI projects. Yet, little is known about the factors that hinder and/or promote the autonomous involvement of people with aphasia in stroke and aphasia PPI projects. This study aimed to explore the views and perspectives of people who live with chronic stroke, with and without aphasia, with experience in research prior to stroke, on their potential involvement as research partners.
Methods The research team included a PPI partner with chronic stroke-induced aphasia. Semi-structured interviews were conducted online with people with chronic stroke (n=8), four with aphasia and four without. Interviews were subject to thematic analysis.
Results Inductive thematic analysis generated four themes: (1) the kinds of Restrictions that make involvement in research difficult, (2) the preferred levels and ways of Involvement during the research process, (3) the Support required for active and collaborative involvement, and (4) the Impact of their involvement and how it benefits the study’s outcomes. Furthermore, people with aphasia stressed the importance of constant contextual and third-party support to sustain their active engagement within the research team.
Conclusion People experiencing chronic stroke and aphasia are willing to be involved as PPI partners if the research team provides the necessary support. Recommendations for researchers to consider before commencing co-produced research with people with stroke and aphasia are provided.