Co‐Design of a Unified, International Aphasia Awareness Campaign

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Authors: Claire Bennington, Ciara Shiggins, Jytte Isaksen, Emma Beesley, Kim Beesley, Jean‐Marie Annoni, Jude Czerenkowski, Carly Davey, Natalie Douglas, Alexia Kountouri, Caitlin Longman, Apoorva Paurinak
+3 more Sarah Scott, Kathryn Shelley, Sarah J. Wallace
Cited by: 1
References: 28

Abstract

ABSTRACT Introduction Poor aphasia awareness is an international problem. Previous aphasia awareness campaigns have lacked coordination across countries and have not routinely involved people with the diversity of skills needed to design a campaign. We aimed to co‐design a unified, international aphasia awareness campaign. Methods An international, multi‐stakeholder co‐design project was conducted, using online iterative workshops. People with lived experience of aphasia ( n = 3), representatives of aphasia, stroke, and rehabilitation organisations ( n = 3), and experts in media, marketing, health promotion, and implementation science ( n = 3), collaborated across six rounds of co‐design workshops. Three meetings were held per round (18 meetings in total) to accommodate time zones and availability. Workshop topics included: (1) individual experience, motivations, and preferences for collaborating, (2) campaign outcome and target audience, (3) campaign message, (4) campaign format and design, (5) campaign call/s to action and operationalisation, and (6) final review and celebration. Workshops were conducted using Zoom videoconferencing and were recorded. After each meeting, key discussion points, decisions, and outcomes were summarised and synthesised. Framework and Thematic analyses were used to identify themes across all meetings. Involvement was reported per the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 2 short form. Results The desired outcome of the campaign was: ‘One day the world's population will understand aphasia and all people with aphasia will be treated with respect and kindness.’ All other campaign elements aligned with this outcome, including the target audience (general public), messages (clarifying what aphasia is/is not and its impact), call/s to action (how to respond to a person with aphasia, where to learn more, and ways to engage), and a tag line (Recognise, Respond, Respect). An operationalisation plan was also co‐developed. Conclusion A blueprint for a culturally responsive, unified, international aphasia awareness campaign and strategy for operationalisation was co‐designed. Future directions include co‐developing multi‐lingual and culturally sensitive campaign materials, implementation, and scale‐up. Patient or Public Contribution Two research advisors with lived experience of aphasia contributed to project conceptualisation, workshop planning and facilitation, analysis, and dissemination. Additionally, the co‐design team involved three members with lived experience of aphasia and three representatives from key organisations. All contributed to the manuscript preparation.

Fields of Study & Subjects

Neurobiology of Language and Bilingualism Epilepsy research and treatment Traumatic Brain Injury Research

Publication details

Journal / source
Health Expectations
Publisher
Wiley
Volume
29
Issue
2
Publication date
1 April 2026
Language
EN