The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research

Abstract

Background Patient and Public Involvement (PPI) in aphasia research requires researchers to include people with aphasia 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 framework to guide PPI in aphasia research. This study aimed to extract the items and statements relevant for the development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for designing and implementing PPI in aphasia research, in collaboration with people with aphasia. Method The method recommended by the EQUATOR network 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 panellists, from 13 countries, voted in round one with 87% (20/23) responding in round two. The final PAOLI framework includes the following 17 items (with 66 descriptive statements): 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 panellists as the most relevant for the involvement of people with aphasia as research partners. Conclusion The PAOLI is the first international consensus framework for guiding patient involvement in aphasia research. Researchers are encouraged to adopt the framework to improve the quality of their research by promoting the meaningful involvement of people with aphasia within the research team from the start.

Development and evaluation of a stroke research Public Patient Involvement Panel

“…Also on p. 4, the authors state, "The formation of a PPI panel for stroke research will be supported by the guidelines developed from the INVOLVE framework." Please consider the PAOLI framework (Charalambous et al, 2023; Research Involvement and Engagement, https://doi.org/10.1186/s40900-023-00484-9) on the PPI of people with aphasia and communication challenges after stroke as a guide for democratic and meaningful involvement.…”

“…A similar panel has been recently developed for stroke patients with aphasia (Charalambous et al, 2023; Research Involvement and Engagement, https://doi.org/10.1186/s40900-023-00484-9). Considering the large overlap with the authors' planned work, the authors should discuss how this earlier work is related to their PPI panel, and how their PPI panel goes beyond this earlier work.…”

“…The Irish National Audit of Stroke's National Report in 2020 found that stroke is the leading cause of acquired adult disability in Ireland. Aside from increased mortality rates, there are several burdensome consequences of stroke that can reduce a person's quality of life 3 . Post-stroke fatigue can be a debilitating symptom, with two-fifths of people with stroke reporting it as their worst symptom 4 .…”

Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A realist review.

“…In Phase 2 of this project, we will explore other frameworks to capture PPI contributor's experiences, including the PAOLI framework (Charalambous et al, 2023) How will the authors approach the PPI patients in all advisory groups to avoid tokenism, especially those with communication difficulties?…”

The Greek-Cypriot Word Pool: Normative Data for Concreteness and Imageability for 2,950 Words

“…While a lot of work and research has been done on psycholinguistic research over the recent years in Cyprus (e.g., Anyfantis et al, 2023;Charalambous et al, 2023;Grohmann et al, 2021;Karpathiou et al, 2018;Theodorou et al, 2022;Tsiplakou et al, 2022) and words are widely used as stimuli in research (Baddeley et al, 1975;Healey et al, 2018;Traikapi et al, 2022;White et al, 2014), there is a notable lack of such resources available for Greek-Cypriots. The absence of standardized word pools presents a substantial challenge, when conducting research that relies on serial cognitive assessments using alternate test forms.…”