Oral Presentation Smart Strokes Annual Scientific Meeting 2024

Evaluating the capacity-building modules for researchers and people with lived experience of stroke (106833)

Elizabeth A Lynch 1 , Brenda Booth 2 , Adrian O'Malley 2 , Stacy Larcombe 1 , Julie Bernhardt 3 , Liz Gallagher 4 , Kate Hayward 3 5 , Gillian Mason 6 , Ciara Shiggins 7 , Dana Wong 8
  1. Flinders University, Bedford Park, SA, Australia
  2. Lived Experience Contributor, Australia
  3. Florey Institute of Neuroscience and Mental Health, Melbourne
  4. Stroke Foundation, Melbourne
  5. Monash University, Melbourne
  6. Hunter Medical Research Institute, Newcastle
  7. University of Queensland, Brisbane
  8. La Trobe University, Melbourne

Introduction: Two online training modules were co-designed to support researchers and people with lived experience of stroke to work effectively together on research projects.

Aim: to evaluate whether completion of the modules led to changes in knowledge, skills, confidence, motivation or actions regarding collaborative research practices. 

Methods:  Online semi-structured interviews with people with lived experience of stroke and researchers who had completed either training module. Data were qualitatively content analysed, using the COM-B model of behaviour change to guide analysis.

Results: 

12 researchers (75% women) and 11 survivors of stroke (55% women) participated.  

Participants from both groups reported that completing the module improved their understanding of the types and levels of involvement in the research process, and how roles could be defined. Survivors of stroke described more confidence to work collaboratively and effectively.  Participants from both groups felt more confident to ask questions to ensure both parties were working effectively together. 

Participants’ motivation to work collaboratively was already strong (all had chosen to access the module and self-nominated to be involved in its evaluation) and did not change substantially following completion of the module.

One researcher reported changing research practices as a direct result of completing the module, by inviting people with lived experience of stroke to collaborate on a grant application and modifying ongoing research protocols to enhance the involvement of lived-experience contributors in research projects.  Several researchers indicated that they intended to change their behaviours and partner with lived-experience contributors on future projects.

Conclusion: People who accessed the modules reported benefits in knowledge, skills and confidence to work collaboratively in research.

Relevance to clinical practice or patient experience: These resources are freely available so clinicians or people with lived experience of stroke can build their knowledge and confidence to work collaboratively on research and other types of projects.