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首页> 外文期刊>Journal of empirical research on human research ethics : >Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research
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Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research

机译：对阿尔茨海默氏症和痴呆研究的参与者看法的伦理和方法论考虑因素

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摘要

The urgent need to expand enrollment in Alzheimer's disease and related dementia (ADRD) research has synergized calls for an empiric science of research recruitment, yet, progress in this area is hindered by challenges to measuring views toward ADRD research. This paper reports ethical and methodological considerations identified through a prospective qualitative study investigating ADRD patient and caregiver views on research recruitment and participation surrounding acute illness. Ethical and methodological considerations were identified through a combination of memoing, collaboration with a Community Advisory Board (CAB), and analysis of interview data from ADRD patients (N = 3) and/or caregivers (N = 28). These included risk for undue influence attributable to role ambiguity/motivational misconceptions, divergent decision-making preferences, bias contributing to low referrals of ADRD participants, and difficulty answering abstract/hypothetical questions. Many considerations were successfully addressed with multifaceted, proactive strategies, and CAB input. Findings have implications for recruitment science research and the validity of inferences regarding research preferences.
机译：迫切需要扩大阿尔茨海默病和相关痴呆症（ADRD）研究的注册人数，这促使人们呼吁开展研究招募的经验性科学，然而，衡量对ADRD研究的看法的挑战阻碍了这一领域的进展。本文报告了通过一项前瞻性定性研究确定的伦理和方法学考虑，该研究调查了ADRD患者和护理者对围绕急性疾病的研究招募和参与的看法。通过记录、与社区咨询委员会（CAB）合作，以及分析ADRD患者（N=3）和/或护理者（N=28）的访谈数据，确定了伦理和方法方面的考虑因素。这些风险包括角色模糊/动机错误观念导致的不当影响风险、决策偏好的差异、导致ADRD参与者推荐率低的偏见，以及回答抽象/假设问题的困难。通过多方面、积极主动的策略和CAB投入，许多考虑因素都得到了成功解决。研究结果对招聘科学研究和研究偏好推断的有效性有影响。

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