Why They Stay: Understanding Research Participant Retention in Studies of Aging, Cognitive Impairment and Dementia.

Judith Neugroschl, Mary Sano, Xiaodong Luo, Margaret Sewell
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引用次数: 13

Abstract

Background: Retaining participants in longitudinal research in aging and Alzheimer's disease remains a significant challenge. "Study partners" are often required to insure participation and accuracy of information because cognitive impairment may interfere with accurate reporting. The purpose of the present report was to identify attitudes and reasons for continued participation in observational research.

Methods: 53 individuals (33 participants and 20 study partners) who were participating in the longitudinal cohort at the Mount Sinai Alzheimer's Disease Research Center were available for this survey. They were asked a single open-ended question about why they continued in our study. Seven categories of answers (e.g., Altruism, Value relationship with staff, and Concern about health) were identified and frequency of endorsement was summarized for participants and study partners separately.

Results: There were 82 responses from the 53 individuals. Forty five percent of the participants and 55% of the study partners identified altruism as one reason they participate in research over time, and 75% of study partners and 30% of participants mentioned valuing the relationship with staff as a reason they stayed in research.

Conclusions: This data suggests that retention efforts should be directed toward fostering strong relationships between research staff and study participants and reinforcing the opportunity to contribute to others, which fosters a sense of altruism.

Abstract Image

他们为什么留下来:了解研究参与者在衰老、认知障碍和痴呆研究中的保留。
背景:在老龄化和阿尔茨海默病的纵向研究中保留参与者仍然是一个重大挑战。“研究伙伴”通常需要确保参与和信息的准确性,因为认知障碍可能会干扰准确的报告。本报告的目的是确定继续参加观察性研究的态度和理由。方法:参与西奈山阿尔茨海默病研究中心纵向队列研究的53人(33名参与者和20名研究伙伴)可用于本调查。他们被问了一个单一的开放式问题,关于他们为什么继续我们的研究。确定了七类答案(如利他主义、与员工的价值关系和对健康的关注),并分别总结了参与者和研究伙伴的认可频率。结果:53人共收到82份问卷。45%的参与者和55%的研究伙伴认为,随着时间的推移,利他主义是他们参与研究的一个原因,75%的研究伙伴和30%的参与者提到,重视与员工的关系是他们留在研究中的一个原因。结论:这些数据表明,挽留员工的努力应该着眼于培养研究人员和研究参与者之间的牢固关系,并加强为他人做出贡献的机会,从而培养一种利他主义意识。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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