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帕金森病患者及其照护者的远程和面对面研究教育。

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

机构信息

College of Arts and Sciences.

Department of Medicine.

出版信息

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: = 28, care partner: = 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).

摘要

目的

远程学习版的开发研究参与增强和倡导培训计划为不同的老年人(梦想)项目,TeleDREAMS 为患有帕金森病(PD)的老年人及其护理伙伴提供远程临床研究过程和倡导教育。

方法

参与者参与远程学习,阅读八周的临床研究过程和倡导教育模块。他们还与工作人员每周进行半小时的电话讨论,讨论每个模块。参与者(PD:=28,护理伙伴:=15)接受健康素养、生活质量、抑郁、研究参与和倡导措施的测试。

结果

PD 患者在干预后健康素养提高。与护理伙伴一起参与的 PD 参与者在健康素养方面的改善程度高于没有护理伙伴的参与者。与之前研究过的类似面对面的 DREAMS 项目相比,TeleDREAMS 中的 PD 参与者的失访率更低。大多数参与者报告在项目结束后 6 至 9 个月内对 PD 老年人进行了研究参与和患者倡导。

结论

TeleDREAMS 可能会提高帕金森病患者及其护理伙伴的健康素养。如果增加倡导和健康及研究素养转化为增加研究参与,那么 TeleDREAMS 可能是对增加参与感兴趣的研究人员的一个重要策略。

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