Sanders-Brown Center on Aging, University of Kentucky, Lexington.
College of Public Health, University of Kentucky, Lexington.
Gerontologist. 2020 May 15;60(4):693-703. doi: 10.1093/geront/gnz096.
Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer's disease. While barriers to participation are well documented, less is known about motivations for Alzheimer's disease clinical research participation. The purpose of this study was to explore what motivates individuals-who ultimately develop an ongoing connection to research and frequently participate-to engage and stay involved in Alzheimer's disease research.
Individuals who had participated in multiple Alzheimer's disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.
Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer's disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.
These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.
在寻找减缓或预防阿尔茨海默病的方法时，研究参与者的招募和保留是一个重大挑战。虽然参与障碍已有充分记录，但对于参与阿尔茨海默病临床研究的动机知之甚少。本研究的目的是探讨促使个体与研究建立持续联系并经常参与阿尔茨海默病研究的动机。
对曾参与多次阿尔茨海默病相关临床试验或其研究伙伴的个体进行了关于他们参与和继续参与阿尔茨海默病研究的决定的访谈。
共对 33 名个体进行了访谈，其中 28 名为研究参与者，5 名为研究伙伴。所有访谈均进行了录音，并逐字转录以供分析。受访者表示通过媒体、社区活动、医生和其他研究参与者了解到研究机会。虽然许多人最初是因为家族史或认识患有阿尔茨海默病的人而受到激励，但也有一些人没有个人接触。预防研究中的个体通常很积极主动，将研究视为解决记忆问题的建设性方法。尽管一些人承认研究参与有个人获益，但大多数人表示理解研究的重要性，并希望未来帮助他人，经常提到一种社会责任或道德义务感来帮助他人。与研究地点的人员建立良好的关系鼓励了持续参与。
这些发现表明，寻找研究参与者的努力应强调研究的价值，并帮助阐明参与如何有助于子孙后代的福祉。
