Lived experience is a unique form of knowledge and expertise that can optimise the contextualisation of academic research. Working with lived-experience contributors in a meaningful, collaborative and ongoing way can improve the quality and the relevance of research to people with lived experience of stroke, and the accessibility of the treatments and services that it informs.

In this introductory module for researchers, you’ll explore how to work effectively with lived-experience contributors. The module features ‘top tips’ that were developed in partnership with stroke researchers, clinicians and people with lived experience of stroke, along with some working examples of successful research partnerships.

Learning objectives

• Identify the ways in which lived-experience contributors add value to your research.
• Identify key actions and behaviours that will help you work most effectively with lived-experience contributors.
• Understand and plan for the accommodations you may need to provide for your lived-experience contributors.
   

Additional resources

Follow the links below to request copies of resources developed by the Young Stroke Service project.

Communication Access and Inclusion Guideline and Procedure

This guide is an example of a research and service group supporting communication accessibility. This guide provides practical information to help improve communication access. Communication access can support people with aphasia, and other communication disability. The guide includes:

1. an interactions checklist,
2. an environment checklist, and
3. a document checklist.
   
   

The principles and resources can help improve access and inclusion for all people with lived experience of stroke.

Icon Suite for Research Information Sheet and Consent Forms

The suite contains 78 icons designed for use in research information sheet and consent forms. The icons were developed with a team of people. The team included, people with lived experience of stroke and aphasia, speech pathologists plus a graphic designer. There is a colour set and a greyscale set. The icons may help some readers to understand research forms more easily.

Acknowledgements

This module, and the module Working well with stroke researchers, was developed in partnership with stroke researchers, clinicians and people with lived experience of stroke as part of the Inclusion and diversity in the stroke research process workshop coordinated by the NHRMC Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery.

Authors:

Julie Bernhardt, Clinician Researcher in stroke recovery and rehabilitation. Co-Head, Stroke Theme at the Florey Institute of Neuroscience and Mental Health

Adrian O’Malley, Survivor of stroke and Peer Facilitator and Mentor at the Physical Disability Council of NSW

Brenda Booth, Survivor of stroke and Stroke Foundation Research Advisory Committee Representative

Ciara Shiggins, Postdoctoral Research Fellow, Centre of Research Excellence in Aphasia Recovery and Rehabilitation and the Queensland Aphasia Research Centre (University of Queensland)

Dana Wong, Associate Professor & Clinical Neuropsychologist, School of Psychology & Public Health, La Trobe University

Elizabeth Lynch, Senior Research Fellow, Matthew Flinders Fellow, College of Nursing and Health Sciences, Flinders University

Gillian Mason, Manager, Stroke Research Register (Hunter), School of Health Sciences, The University of Newcastle

Kate Hayward, Senior Research Fellow in Stroke Recovery and Dame Kate Campbell Fellow, Departments of Physiotherapy, Medicine, and Florey Institute of Neuroscience and Mental Health, University of Melbourne