A Randomized Prospective Survey to Understand Readiness for Participation in Dementia Research Studies Across Diverse Communities: Une enquête prospective à répartition aléatoire visant à comprendre la disposition à participer à des études de recherche sur la démence dans diverses communautés

Abstract

Objective:

Even with recruitment efforts for racial and ethnic minorities in dementia research, there is still underrepresentation in these communities. Targeting barriers and facilitators to research participation, we developed and tested a culturally tailored communication approach tailored for Hispanics.

Methods:

An iterative process informed by input from the minority advisory board of an Alzheimer's Disease Research Center, developed 2 brief health communication videos, featuring Hispanic actors/Spanish language sub-titles. The experimental video (POWER) focused on barriers, facilitators, and readiness to participate in dementia research. The control video focused on education only. A randomized prospective survey compared POWER vs. control. While race or ethnicity were not inclusion criteria for enrollment, we oversampled Hispanic and non-white communities. We examined change pre- vs. post-video on dementia knowledge, cumulative barriers, and facilitators to research participation, as well as change in research readiness measured by the Transtheoretical behavior change model.

Results:

The analyzable sample (N = 184) had a mean age of 40.0 (SD = 13.2) years, 57.4% (n = 105) female, 47.2% (n = 85) non-white, 21.2% (n = 39) Hispanic, with 88 individuals randomized to POWER and 96 to control. Unadjusted evaluation of change from pre- vs. post-video showed significant improvements in dementia knowledge, research facilitators and research barriers (all ps < .001) but no significant difference between POWER vs. controls. Adjusted for age, gender, race, ethnicity and education, only change in dementia knowledge remained significantly improved for the group as a whole, with no significant difference between POWER vs. controls. In the entire sample, Hispanics had significantly more improvement in research readiness (r = .217, p = .003). Exploratory analysis of positive change predictors in those randomized to POWER and to control suggests Hispanics in POWER may be at a disadvantage with respect to dementia knowledge (r = −.248, p = .02) and research facilitators (r = −.342, p = .001).

Conclusions:

Health communications can improve dementia knowledge across diverse communities.