Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.
Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.
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DOI：
10.1177/1556264620974898
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发表时间：
2021-03
期刊：
影响因子：
--
通讯作者：
Gilmore-Bykovskyi A
中科院分区：
文献类型：
--
作者：
Benson C;Friz A;Mullen S;Block L;Gilmore-Bykovskyi A
扩大阿尔茨海默病和相关痴呆症(ADRD)研究招生的迫切需要协同作用，呼吁建立研究招募的经验科学，然而，这一领域的进展受到衡量对ADRD研究的看法的挑战的阻碍。本文报告了一项前瞻性的定性研究，调查了ADRD患者和照顾者对急性疾病研究招募和参与的看法，发现了伦理学和方法论方面的考虑。伦理和方法论方面的考虑是通过结合备忘录、与社区咨询委员会(CAB)的合作以及分析ADRD患者(N=3)和/或照顾者(N=28)的访谈数据来确定的。这些问题包括由于角色模糊/动机误解、决策偏好分歧、导致ADRD参与者转介较少的偏见以及难以回答抽象/假设性问题而产生不适当影响的风险。通过多方面、积极主动的战略和CAB投入，成功地解决了许多考虑因素。研究结果对招聘、科学研究和关于研究偏好的推论的有效性有影响。
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.
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影响因子：
5.7
作者：
Hill, Nikki L.;Mogle, Jaqueline;Van Haitsma, Kimberly
通讯作者：
Van Haitsma, Kimberly
影响因子：
7.2
作者：
Frank, Lori;Shubeck, Emily;Epstein-Lubow, Gary
通讯作者：
Epstein-Lubow, Gary
DOI：
10.1177/1533317511423020
发表时间：
2011-09
期刊：
American journal of Alzheimer's disease and other dementias
影响因子：
--
作者：
Darnell KR;McGuire C;Danner DD
通讯作者：
Danner DD
DOI：
10.1016/j.socscimed.2017.11.028
发表时间：
2018-01
期刊：
Social science & medicine (1982)
影响因子：
--
作者：
Carrera JS;Brown P;Brody JG;Morello-Frosch R
通讯作者：
Morello-Frosch R
影响因子：
3.1
作者：
Birks, Melanie;Chapman, Ysanne;Francis, Karen
通讯作者：
Francis, Karen