Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson's Disease and Their Care Partners Receiving Accessible Research Education.

IF 2.1 4区 医学 Q3 CLINICAL NEUROLOGY
Parkinson's Disease Pub Date : 2023-09-11 eCollection Date: 2023-01-01 DOI:10.1155/2023/5519646
Maria E Ramos, Suraj Pothineni, Liang Ni, Allison A Bay, Todd Prusin, Madeleine E Hackney
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引用次数: 0

Abstract

Background: People with Parkinson's disease (PWP) and their care partners (CP) are underrepresented in research.

Methods: As an eight-week research advocacy training program, TeleDREAMS was designed to increase understanding of, and participation in, clinical research by older adults through topics on the research process. Qualitative analysis was conducted to explore themes from 365 thirty-minute semistructured phone interviews with 32 PWP and 17 CP TeleDREAMS participants. Interviews gauged progress, motivation, and information retention after each weekly module.

Results: Eight salient themes were identified from the interviews, including Understanding the Importance of Advocacy and Becoming Cognizant of Past Advocacy Experiences.

Conclusions: While some findings aligned with weekly module topics, others, such as stated learning preferences and knowledge acquisition of older adults in an educational program, were unexpected. TeleDREAMS may increase interest in community engagement, research participation, and advocacy roles in marginalized and underrepresented participants.

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帕金森病患者及其护理伙伴接受无障碍研究教育的态度、知识和研究兴趣的定性分析。
背景:帕金森病患者及其护理伙伴在研究中的代表性不足。方法:作为一项为期八周的研究倡导培训计划,TeleDREAMS旨在通过研究过程中的主题来增加老年人对临床研究的理解和参与。对32名PWP和17名CP TeleDREAMS参与者进行了365次30分钟的半结构化电话采访,并对其主题进行了定性分析。访谈衡量了每个每周模块后的进度、动机和信息保留情况。结果:从访谈中确定了八个突出的主题,包括理解倡导的重要性和认识过去的倡导经历。结论:虽然一些发现与每周的模块主题一致,但其他发现,如教育项目中老年人的学习偏好和知识获取,是出乎意料的。TeleDREAMS可能会增加人们对社区参与、研究参与以及边缘化和代表性不足参与者的宣传作用的兴趣。
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来源期刊
Parkinson's Disease
Parkinson's Disease CLINICAL NEUROLOGY-
CiteScore
5.80
自引率
3.10%
发文量
0
审稿时长
18 weeks
期刊介绍: Parkinson’s Disease is a peer-reviewed, Open Access journal that publishes original research articles, review articles, and clinical studies related to the epidemiology, etiology, pathogenesis, genetics, cellular, molecular and neurophysiology, as well as the diagnosis and treatment of Parkinson’s disease.
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