Strategies for engaging individuals with traumatic brain injury and cognitive impairment in virtual research settings

BACKGROUND: Engaging individuals with lived experience in the research process is essential for producing patient-centered research with real-world impact. However, there is a gap in knowledge about how to effectively engage individuals with traumatic brain injury (TBI) and cognitive impairment as active research collaborators. This gap is particularly important to address in virtual settings given engagement in multi-site studies that cover many different parts of the country. This study aimed to identify key challenges and effective strategies for fostering meaningful engagement in research with individuals with TBI and cognitive impairment and their care partners. METHODS: Semi-structured interviews (n = 21) were conducted with study investigators, staff, care partners and those with TBI to identify challenges and strategies for engagement in the Brain Injury Rehabilitation: Improving the Transition Experience (BRITE) trial; ClinicalTrials.gov identifier NCT03422276. Interviews were analyzed using thematic analyses. A coding team, which included individuals with TBI and care partners, met weekly to develop and validate an iterative, consensus-based codebook. Final themes were identified through team consensus and member checking. RESULTS: Participants described engagement challenges primarily related to the virtual study environment, lack of familiarity with technology, and the diverse accommodations needed for those with TBI and cognitive impairment. Strategies to prevent or alleviate challenges included offering proactive technical support, beginning each virtual meeting with a rapport-building activity, providing individually tailored accommodations and communications, as well as universal accommodations to decrease cognitive load and distractions and increase opportunities for participation. CONCLUSIONS: Results offer practical guidance for engaging collaborators with TBI and cognitive impairment and their care partners in research conducted virtually. Findings from this study are applicable to research that engages those with cognitive impairment in virtual research settings. CLINICAL TRAIL NUMBER: Semi-structured interviews were conducted with study investigators, staff, care partners and those with TBI in the Brain Injury Rehabilitation: Improving the Transition Experience (BRITE) trial; ClinicalTrials.gov identifier NCT03422276; Registration Date: 2/13/2018.