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

Abstract

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 development of the PAOLI (People with Aphasia and Other Layperson Involvement) guideline for reporting Patient and Public Involvement (PPI) in aphasia research

“…For the development of the PAOLI, the EQUATOR (Enhancing the QUAlity and Transparency Of health Research) toolkit for developing a reporting guideline (Moher et al, 2010) was followed. This involved the following stages: (1) gathering evidence from a scoping review [7], (2) conducting interviews with PWA and stroke on the topics to be included in the guideline, (3) undertaking a thematic analysis of the in-depth interviews [9], (4) a two-round Delphi survey for item/statement selection and (5) an experts' consensus meeting to nalize the guideline. PAOLI was registered as a 'reporting guideline under development' on the EQUATOR Network website in June 2022 (https://www.equator-network.org/library/reporting-guidelines-under-development/reporting-guidelines-underdevelopment-for-other-study-designs/ [accessed 10 December 2022]).…”

“…The research team consisted of 7 individuals: a leading investigator, 2 PPI partners and 4 communication partners. The rst author (MC), a senior speech and language therapist practising in aphasia rehabilitation, with previous PPI experience in aphasia research1 served as the lead investigator [7,9,14]. The two PPI partners are co-authors AK and JRS.…”

Adaptation of the Aphasia Impact Questionnaire-21 into Greek: A Reliability and Validity Study

“…A.K. has previous experience with aphasia research as she was involved in research with Charalambous and colleagues between 2019 and 2022 [18]. The aim for collaborating with A.K.…”

“…According to the Patient and Public Involvement (PPI) approach, to meet the practical needs of PWA, self-rating tools examining the impact of aphasia on QoL should be developed with the active engagement of PWA as members of the research team [18]. Patient Reported Outcome Measures (PROMs) related to QoL should be developed using PPI co-production methodology [3].…”

“…PPI methodology was implemented to ensure the tool's relevance, appropriateness, and test its content validity [3]. The involvement of co-author A.K., the PPI partner, in the research procedure optimized the validity and applicability of the research itself and the effectiveness of the resulting tool [18]. A.K.…”