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
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Lynch, Elizabeth
Bright, Felicity
Chamberlain, Saran
Adebajo, Adewale
Campbell, Pauline
Chen, Donna
English, Coralie Kym
Graham, Ian
Isaksen, Jytte
Manning, Molly X
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SAGE Publications
Abstract
RATIONALE: 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.
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Rehabilitation, Stroke, consensus, lived experience, patient engagement, patient public involvement, recovery, research engagement, 4201 Allied Health and Rehabilitation Science, 4203 Health Services and Systems, 42 Health Sciences, Health Disparities and Racial or Ethnic Minority Health Research, Brain Disorders, Cerebrovascular, Clinical Research, Aging, Behavioral and Social Science, Physical Rehabilitation, 7.1 Individual care needs, 1103 Clinical Sciences, 1109 Neurosciences, Neurology & Neurosurgery, 3202 Clinical sciences, 3209 Neurosciences
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International Journal of Stroke, ISSN: 1747-4930 (Print); 1747-4949 (Online), SAGE Publications, 17474930261466091-17474930261466091. doi: 10.1177/17474930261466091
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Except where otherwise noted, this item's license is described as Creative Commons Attribution