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Updated: Jul 12, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
A Randomized Prospective Survey Targeting Knowledge, Barriers, Facilitators and Readiness to Participation in
M Sajatovic1, L K Herrmann, C Knebusch
1Martha Sajatovic, M.D., Professor of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Director, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, 10524 Euclid Avenue, Cleveland, Ohio 44106, Tel. 216/844-2808, Fax 216/844-2742,
Background:
While the U.S. National Institute on Aging has developed a strategy for recruitment of minority populations in dementia research, including increasing awareness and engagement, minority populations remain under-represented, and the evidence-base is limited. We tested a conceptually driven communication approach targeting barriers and facilitators to research participation vs. standard education.
Methods:
In this 2-phase project, input from the minority advisory board of the Cleveland Alzheimer's Disease Research Center informed development of 2 brief health communication videos which differentially focused on research barriers and facilitators (POWER) versus an education control (Phase 1). In Phase 2, a randomized prospective survey compared POWER vs. an active comparator control on pre/post video change in dementia knowledge, cumulative barriers, and facilitators to dementia research, and change in research readiness measured by the Transtheoretical behavior change model. Changes in outcomes were evaluated using two group by two time points repeated measure analysis of variance (RMANOVA) controlling for age, gender, race, and education.
Results:
The pre-video sample (n=242) had mean age of 57.6 (SD17.2) years, mostly female (n=181, 74.8%), 42.6% non-white. The analyzable sample who completed both pre and post assessments comprised n=102 in the POWER and n=105 in the control group. Non-white participants made up 41.1% of the analyzable POWER (n=51) and 44.1% (n= 52) of controls. Adjusted for age, gender, race and education, controls had a greater increase in dementia knowledge (p=0.004). There was a significant reduction in barriers for POWER (p=.044) vs. control. There were no differences in research facilitators and research readiness between POWER vs. control. Among African Americans (n=59, 28.5% of the analyzable sample) there was a trend for improved dementia knowledge (p=.059) favoring control and in research readiness (p=.051), favoring POWER.
Conclusions:
Targeting barriers and attitudes towards research could inform development of approaches with potential to improve dementia research participation across diverse communities.
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