ArticleResearch involvement and engagement2023
The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research.
Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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15 citing papers in PubMed, 25 citations in OpenAlex.
- A global multilingual cocreation of aphasia priority topics through patient and public involvement.Research involvement and engagement · 2026Article
- Measuring affective symptoms of depression in aphasia: development of an accessible ecological momentary assessment tool.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
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- Development and Psychometric Validation of the Cyprus Aphasia Screening Test (CAST).Brain sciences · 2025Article
- Making smartglasses accessible: perspectives and prototypes from co-design with people with aphasia.Scientific reports · 2025Article
- From measures to meaning: a case study on co-defining aphasia recovery outcomes with patient experts.Research involvement and engagement · 2025Article
- Understanding the Scope, Intent and Extent of Published Conceptual Frameworks of Frameworks for Patient and Public Involvement in Health and Social Care Research: A Rapid Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Co-Designing Aphasia Services: Evaluation of Involvement and Processes to Support Inclusion of People With Post Stroke Aphasia.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- 'A Meaningful Difference, but Not Ultimately the Difference I Would Want': A Mixed-Methods Approach to Explore and Benchmark Clinically Meaningful Changes in Aphasia Recovery.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- The Adaptation of the Communicative Effectiveness Index (CETI) into Greek: A Reliability and Validity Study.Brain sciences · 2024Article
- The coproduction of a multilevel personal narrative intervention for people with aphasia in a community communication support group-A pilot study.Frontiers in stroke · 2024Article
- Development and evaluation of a stroke research Public Patient Involvement Panel.HRB open research · 2024Article
- Communication Support and Training for Families Affected by Aphasia: A National Survey Exploring Perspectives of Professionals.International journal of language & communication disordersArticle
- 'It Is of Course About Being Human Together': Co-Development of a Primary Progressive Aphasia Awareness Campaign to Enhance Understanding of Speech and Language Therapy.International journal of language & communication disordersArticle
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Authors and funding
5 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient 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.
methodThe 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.
resultsTwenty-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.
conclusionThe 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.
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