Episodes of lucidity (EL) are clinically and potentially epidemiologically significant events that occur among individuals with advanced dementia. EL are characterized by a spontaneous return of abilities previously thought to have been lost and are predominantly reported near end of life. Audiovisual observation offers a valuable approach to studying EL, providing opportunities to characterize verbal/non-verbal features of EL as well as their surrounding contexts. Approaches to capturing and characterizing audiovisual data and potential verbal/non-verbal indicators of EL near end of life are lacking.

This study determined the acceptability and feasibility of a multi-faceted observational study protocol to characterize potential observable indicators of EL among people with advanced dementia near end of life.

This study incorporated longitudinal audiovisual observation, informant field interviews/case review of potential EL events by informants. We examined enrollment and retention rates, task load and usability ratings from clinician and research staff across data collection and processing tasks, and surveys and qualitative appraisal from participants and staff regarding feasibility and acceptability. The NASA TLX Task Load Index measures workflow assessment to generate a combined score between 0-20, with 0 indicating higher workflow assessment. The modified System Usability Scale (SUS) measures usability with a score of 0-100, with 100 indicating higher usability and a target score ≥68 indicating usability higher than 50% of the average score.

Five eligible individuals were enrolled, yielding a 100% enrollment/retention rate, and 103 observations totaling 280 hours of observation across participants. NASA TLX Task Load Index scores of 2.9 over 4 months, with vast improvement over time indicate study procedures with iterative refinements were feasible. Average modified SUS score for clinician and research staff was 96 and 82.4 respectively, indicating high usability with notable improvement over time. Surveys and qualitative appraisal from participants and staff endorse high rates of acceptability and feasibility. Additionally, the study team identified 9 potential EL across 3 participants. Seven caregivers and two clinicians participated in case reviews to review the corresponding audiovisual data, resulting in 3 endorsed EL.

The lack of diversity in health research participation has serious consequences for science as well as ethics. While there is growing interest in solving the problem, much of the work to date focuses on attitudes of distrust among members of underrepresented communities. However, there is also a pressing need to understand existing barriers within the cultural and structural context of researchers and research staff.

This study adopted a sequential exploratory mixed-methods design to allow for a focused examination of barriers to inclusive research recruitment among researchers and staff. Barriers first identified from an initial quantitative investigation (web-based survey; n = 279) were further explored through qualitative methods (key informant interviews; n = 26). Participants were investigators and research team members in both phases of the study.

The survey revealed a paradoxical disconnect between participants’ reported belief in the abstract value of diversity in research participation (87.1% important/extremely important) and belief in it as an important goal in their own specific research (38.3% important/extremely important). Interviews reveal that researchers and staff perceive many barriers to the recruitment of members of underrepresented groups and hold a general view of diversity in research as an impractical, even unattainable, goal.

It is crucial that principal investigators not only understand the consequences of the continued exclusion of marginalized groups from research but also implement strategies to reverse this trend and communicate with research staff on the issue. While individual bias does play a role (ex: a priori assumptions about the willingness or ability of members of underrepresented groups to participate), these behaviors are part of a larger context of systemic racism.