The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis

Abstract

Plain English Summary Patient and Public Involvement (PPI) is the active collaboration between researchers and patient groups when conducting research. PPI in aphasia research after stroke is growing in importance. Aphasia is the communication difficulty after stroke that negatively affects speaking and/or understanding, reading and/or writing. People with aphasia are usually involved in a tokenistic way in research teams. Tokenism is including people in the research process, who are usually at a disadvantage, by pretending that their involvement gives the appearance of equality. To avoid tokenism researchers must ensure equal opportunities for patient partners with communication challenges to contribute as PPI researchers. This requires a supportive environment, easy access to information and opportunities for making informed choices. This study aimed to explore the views of people who live with chronic stroke and aphasia on whether they would like to be involved in PPI projects and in what manner. All participants had experience of the research process prior to the stroke event. The research team included a person who lived with chronic aphasia after her stroke. She was named the PPI partner. Interviews were completed online with eight people with chronic stroke. Four with aphasia and four without. Interviews were analyzed and generated four themes (RISI): (1) the kinds of Restrictions patient participants face due to stroke, (2) their preferred levels of Involvement, (3) the Support they need for active and meaningful engagement and (4) their views on the Impact of PPI on research outcomes. The findings were mapped onto the International Classification of Functioning and Disability framework of the World Stroke Organization to depict how an individual’s health status, limitations in activity and environmental barriers for active participation influence their engagement within the research team. People living with chronic stroke, either with aphasia or without, are willing to be involved as patient partners. But researchers need to provide the necessary support suited to their communicative and other stroke-related needs. An aphasia inclusive PPI model will encourage meaningful research activities that make an impact, avoid research waste, rejuvenate the researcher-patient relationship dynamics, translate research outcomes into everyday life, and empower communities of people living with stroke and aphasia.

Keywords

• Stroke
• Patient and public involvement
• People with aphasia
• Thematic analysis
• Impact
• Co-produced research