Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer's Research (CEDAR) Study.
Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer's Research (CEDAR) Study.
复制标题
DOI：
10.14283/jpad.2023.25
复制
发表时间：
2023
影响因子：
--
通讯作者：
中科院分区：
文献类型：
--
作者：
阿尔茨海默病及相关疾病（ADRD）研究未能纳入和吸引黑人参与者是一个主要问题，这限制了研究结果的影响和普遍性。关于黑人成年人参与 ADRD 相关在线研究登记的情况知之甚少。作为社区参与数字阿尔茨海默病研究 (CEDAR) 研究的一部分，本研究旨在加深我们对黑人成年人参与 ADRD 相关在线登记的促进因素和障碍的了解，并了解他们对沟通渠道的偏好。我们邀请所有在脑健康登记处（BHR）注册的黑人参与者完成一项横断面在线调查。该调查包括评级量表和开放文本问题，询问他们对大脑健康研究的态度、加入和继续参与 BHR 的原因、参与的困难以及对联系方式和网站使用的偏好。在所有受邀的 BHR 黑人参与者 (N=3,636) 中，198 人 (5.5%) 完成了调查。平均年龄为 58.4 岁 (SD=11.3)，平均受教育年限为 16.3 年 (SD=2.4)，85.5% 为女性。据报道，加入和继续参与 BHR 的促进因素是个人兴趣（例如，更多地了解自己的大脑健康）和利他主义（例如，帮助研究）。在可以鼓励返回的其他注册功能中，接收有关 BHR 任务的反馈或分数被评为最高。在那些认为 BHR 参与困难的人 (21%) 中，最常见的原因是时间负担。接收研究信息的首选方式是通过电子邮件。参与者报告说，他们最常使用的网站是 YouTube 和 Facebook。我们的研究结果可以为文化响应登记功能的开发和参与工作提供信息，以提高黑人成年人对在线 ADRD 研究的包容性和参与度。建议的策略包括向参与者提供有关其注册机构绩效的反馈并减少注册机构任务的数量。
Failure of Alzheimer’s disease and related diseases (ADRD) research studies to include and engage Black participants is a major issue, which limits the impact and generalizability of research findings. Little is known about participation of Black adults in online ADRD-related research registries. As part of the Community Engaged Digital Alzheimer’s Research (CEDAR) Study, this study aims to increase our understanding of facilitators and barriers of Black adults to participating in ADRD-related online registries, as well as to understand their preferences for communication channels. We invited all Black participants enrolled in the Brain Health Registry (BHR) to complete a cross-sectional online survey. The survey consisted of rating scales and open-text questions asking about their attitudes towards brain health research, reasons for joining and continuing to participate in BHR, difficulties with participating, and preferences for modes of contact and website usage. Of all invited Black BHR participants (N=3,636), 198 (5.5%) completed the survey. The mean age was 58.4 (SD=11.3), mean years of education were 16.3 (SD=2.4), and 85.5% identified as female. Reported facilitators for joining and continuing to participate in BHR were personal interest (e.g., learning more about own brain health) and altruism (e.g., helping research). Among additional registry features which could encourage return, receiving feedback or scores about BHR tasks was rated the highest. Of those who found BHR participation difficult (21%), the most frequent reason was time burden. The most preferred way of receiving study information was via email. Participants reported that the websites that they used the most were YouTube and Facebook. The results of our study can inform the development of culturally-responsive registry features and engagement efforts to improve inclusion and participation of Black adults in online ADRD research. Providing participants with feedback about their registry performance and reducing the number of registry tasks are among the recommended strategies.
登录
查看更多内容
影响因子：
9
作者：
Harkins, Kristin;Sankar, Pamela;Karlawish, Jason
通讯作者：
Karlawish, Jason
影响因子：
14
作者：
通讯作者：
--
非裔美国人个体中的阿尔茨海默氏病：发病率增加还是没有足够的数据？
DOI：
10.1038/s41582-021-00589-3
发表时间：
2022-01
期刊：
Nature reviews. Neurology
影响因子：
--
作者：
Barnes LL
通讯作者：
Barnes LL
DOI：
10.1002/alz.12433
发表时间：
2022-04
期刊：
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子：
--
作者：
Franzen S;Smith JE;van den Berg E;Rivera Mindt M;van Bruchem-Visser RL;Abner EL;Schneider LS;Prins ND;Babulal GM;Papma JM
通讯作者：
Papma JM
DOI：
10.1016/j.jagp.2017.04.013
发表时间：
2017-10
期刊：
The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
影响因子：
--
作者：
Kennedy RE;Cutter GR;Wang G;Schneider LS
通讯作者：
Schneider LS