Advancing engagement of people with lived experience of stroke in recovery and rehabilitation research: Consensus-based core recommendations from the fourth Stroke Recovery and Rehabilitation Roundtable.
Elizabeth A Lynch, Felicity A S Bright, Saran Chamberlain, Adewale Adebajo, Pauline Campbell, Donna T. Chen, Coralie Kym English, Ian D Graham, Jytte Isaksen, Molly X Manning, Sidhiprada Mohapatra, Michelle Nelson, Katie Nesbitt, Torsten Rackoll, Shamala Thilarajah, Steve Zeiler, Lisa KiddRationale:
There is a growing recognition of the importance of engaging with people with lived experience (PWLE) to support research relevance and impact. However, there is little specific guidance for stroke recovery and rehabilitation researchers about how best to engage with PWLE of stroke in research, who face additional barriers to engaging due to common post-stroke sequalae including communication and cognitive difficulties, sensory and perceptual impairments, emotional wellbeing, and fatigue. The aim of this Roundtable was to develop recommendations to support researchers to engage with PWLE of stroke in primary and secondary research conducted in laboratory, clinical, health system or community settings.
Methods:
We convened an interdisciplinary, international taskforce comprising researchers and lived experience experts (n=16) to create recommendations to support researchers to engage with PWLE of stroke meaningfully and respectfully. Guided by priorities and key gaps identified by taskforce members, and underpinned by grey and published literature, we formed discrete workgroups to develop consensus-based recommendations and guidance documents addressing common barriers to engagement in stroke research. The recommendations and guides were reviewed, and consensus was reached during a 2-day hybrid in-person/online meeting of the taskforce. These were further refined through consultation with international experts in research engagement.
Results:
We created the EMBED (Engaging Meaningfully to Build research with people with lived Experience to Drive improvements in stroke research) framework, consisting of five consensus recommendations: Select the engagement approach; Identify people to engage with; Embed accessible and inclusive ways of working; Support and strengthen accessibility and inclusivity; Report accessibility and inclusivity. Ten guidance documents provide practical support to researchers to engage with PWLE of stroke in all research settings.
Conclusions:
The EMBED framework provides researchers with pragmatic and structured support to engage with PWLE in stroke research.