Background Patient and Public Involvement (PPI) is the active partnership between researchers, patients and laypeople in the process of creating research. PPI in stroke aphasia research aims to ensure equal opportunities for informed decision-making and guarantee democratic representation of patient partners within the research team. 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. 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.

The impact of aphasia on the everyday life of Greek-speaking people with aphasia (PWA) is often underestimated by rehabilitation clinicians. This study explores the adaptation and psychometric properties of the Greek (GR) version of The Aphasia Impact Questionnaire-21 (AIQ-21-GR) to address this issue. The aim of this study is to determine the reliability and validity of the Greek version of the AIQ-21. The AIQ-21-GR was administered to 69 stroke survivors, 47 with aphasia and 22 without aphasia. The data were analyzed to determine reliability and validity. Content validity was based on the Consensus-based Standards for the selection of health Measurement Instruments guidelines. The AIQ-21-GR shows high levels of reliability and validity. The results confirmed high scores of internal consistency (Cronbach’s α = 0.91) and indicated good known—groups validity (Mann–Whitney U = 202, p < 001). Content validity achieved high scores with an overall median score of 4 [Q25 = 4, Q75 = 5]. The psychometric properties of the AIQ-21-GR support the reliability and validity of the tool for investigating the impact of aphasia on the quality of life of Greek-speaking PWA. The AIQ-21-GR can be used for setting functional goals in collaboration with PWA and as a patient reported outcome measure for functional communication training.

Background: Patient and Public Involvement (PPI) in aphasia research obliges researchers to include people with aphasia (PWA) as research partners from the beginning of the study. Yet the quality of reporting on the level and type of involvement is poorly documented in the absence of a guideline to document contribution. This study aimed to extract the items and statements relevant for the development of the People with Aphasia and Other Layperson Involvement (PAOLI) reporting guideline, in collaboration with people with aphasia. Method: The EQUATOR method for developing a reporting guideline was followed. This involved: (1) evidence from a scoping review, (2) a thematic analysis of the in-depth interviews, of people with stroke and aphasia, on the topics to be included in the pilot draft, (3) a two round Delphi survey for item/statement selection and (4) an experts’ consensus meeting. The research team involved two PPI partners with chronic stroke-induced aphasia. The research process involved co-design and was informed by the Dialogue model. Results: Twenty-three participants, from 13 countries, voted in round one with 87% (20/23) responding in round two. The PAOLI guideline includes 17 items (with 66 descriptive statements) on how to: establish collaborations, recruit patients, gain informed consent, organize induction meetings, train patient partners, create communication links, engage communication partners, conceptualize topics, establish research priorities, reach consensus, work with co-design methods, develop proposals, assist with dissemination of results, promote implementation of the outcomes, support patient partners and promote self-evaluation, monitor progress and assess impact of the patient involvement. These items were considered by the participants as the most important for the involvement of people with aphasia as research partners. Conclusion: The PAOLI is the first international consensus guideline for reporting patient involvement in aphasia research. Researchers are encouraged to adopt the reporting guideline to improve the quality of their research by documenting the meaningful involvement of people with aphasia within the research team from the start.