Remote and In-Person Research Education for People With Parkinson's Disease and Their Care Partners

• Type of Material: Article
• Authors: Nicole Schindler, Emory University; Allison A Bay, Emory University; Molly Perkins, Emory University; Jordan Jackson, Emory University; Liang Ni, Emory University; Suraj Pothineni, Emory University; Ron Wincek, Emory University; Madeleine Hackney, Emory University
• Language: English
• Date: 2022-06-23
• Publisher: EDUCATIONAL PUBLISHING FOUNDATION-AMERICAN PSYCHOLOGICAL ASSOC
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2022 American Psychological Association
• License: Creative Commons Universal : Public Domain Dedication
• Final Published Version (URL): http://dx.doi.org/10.1037/fsh0000684
• Title of Journal or Parent Work: FAMILIES SYSTEMS & HEALTH
• Volume: 41
• Issue: 1
• Start Page: 26
• End Page: 43
• Keywords: Life Sciences & Biomedicine; DEPRESSION; Family Studies; COMPREHENSION; HEALTH LITERACY; health literacy; OLDER-ADULTS; care partner; research advocacy; PROGRAM; PARTICIPATION; Parkinson's disease; CLINICAL-TRIAL; Social Sciences; INFORMATION; Public, Environmental & Occupational Health; Science & Technology; cognition; DEMENTIA; RECRUITMENT; Health Care Sciences & Services

Abstract

Objective: TeleDREAMS, a distance learning version of the Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors (DREAMS) program, provides remote clinical research process and advocacy education to older adults with Parkinson’s disease (PD) and their care partners. Method: Participants engaged in remote learning, reading eight weekly clinical research process and advocacy education modules. They also had weekly half hour phone discussions with staff about each module. Participants (PD: n = 28, care partner: n = 15) were tested on health literacy, quality of life, depression, research involvement, and advocacy measures. Results: People with PD improved on health literacy postintervention. PD participants who participated with care partners improved more on health literacy than those without care partners. PD participants’ attrition rates were lower for PD participants in TeleDREAMS than those of the similar, in-person program DREAMS program studied before TeleDREAMS. Most participants reported research involvement and patient advocacy for older adults with PD 6 to 9 months postprogram. Conclusions: TeleDREAMS may improve health literacy in participants with Parkinson’s and their care partners. If increased advocacy and health and research literacy translates to increased research involvement, then TeleDREAMS could be an important strategy for researchers interested in increasing participation