Co-design of processes to assist research dissemination to people with aphasia

Co-design of processes to assist research dissemination to people with aphasia

Emily Brogan^1,2,3, Kate Hayward¹, Ruth Barker⁴, Paul Fink, Bruce Simcock, Britta Biedermann³, Erin Godecke<sup>5,6

1</sup>University of Melbourne, Melbourne, Victoria, Australia
²Fiona Stanley and Fremantle Hospital Group, Perth, Western Australia, Australia
³Curtin University, Perth, Western Australia, Australia
⁴James Cook University, Townsville, Queensland, Australia
⁵Sir Charles Gairdner Osborne Park Hospital Group, Perth, Western Australia, Australia
⁶Edith Cowan University, Joondalup, Western Australia, Australia

Abstract

Background: Aphasia WA is a consumer organisation that supports people with aphasia in Western Australia. Frequently, researchers contact Aphasia WA to advertise for participant recruitment. Collecting pre and post therapy outcome measures to determine treatment efficacy is a mainstay of the scientific method. Aphasia WA community group members expressed consistent and persistent dissatisfaction with the complete lack of research feedback. Members stated individual participant performance and overall study results are often absent, sporadic, untimely (at trial completion) and not in aphasia friendly format.
Aim: This co-designed project provides a process guide to assist researchers to feedback participant and study results to people with aphasia.
Method: Using an iterative process in four group discussions, we listened to community group members’ experiences of research participation and their expectations of committing their time to research. These data formed the basis of the Aphasia WA research engagement policy and process guide. An aphasia friendly participant results template (baseline and re-assessment results) was co-designed and piloted with the Upper limb and Language Impairment and Functional Training (UPLIFT) lived experience group.
Result: We present the co-designed research engagement process and participant results template together with our implementation process used in a clinical trial. This ongoing work will continue to be revised by participants in the trial.
Conclusion: Our co-designed resources address current consumer concerns about their research participation. A resource package for future research will be freely available from October 2023. We acknowledge the contribution of Aphasia WA, the UPLIFT executive and Graeme Hankey.

Biography

Emily is the research coordinator for speech pathology at Fiona Stanley and Fremantle hospitals. She holds a post doctoral research fellowship with the University of Melbourne on the UPLIFT trial and is a volunteer for Aphasia WA.