Remote and in-person research education for people with Parkinson's disease and their care partners

Fam Syst Health. 2023 Mar;41(1):26-43. doi: 10.1037/fsh0000684. Epub 2022 Jun 23.

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. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

MeSH terms

  • Aged
  • Caregivers
  • Health Literacy*
  • Humans
  • Parkinson Disease* / therapy
  • Quality of Life