Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.
Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.
复制标题
DOI：
10.1177/14713012231190585
复制
发表时间：
2023-11
影响因子：
2.4
通讯作者：
Banerjee, Sube
中科院分区：
文献类型：
--
作者：
Gridley, Kate;Dixon, Josie;Hicks, Ben;Birks, Yvonne;Baxter, Kate;Miles, Eleanor;Robinson, Louise;Perach, Rotem;Banerjee, Sube
值得注意的是，在从痴呆症研究参与者那里收集远程定量数据方面，缺乏什么构成良好做法的证据。在新冠肺炎大流行期间，面对面的研究变得有问题，特别是在参与者年龄较大、感染风险更高的情况下。Defind-C19研究是一项针对痴呆症患者的大型队列研究，在此期间转向电话数据收集。这篇文章探讨了研究人员在英国第一次新冠肺炎封锁期间通过电话从痴呆症患者那里收集定量数据的经验。其目的是从这些经验中学习，分享见解，并为未来跨学科的研究实践提供信息。七名果断的研究人员接受了采访，讨论了通过电话与面对面收集痴呆症患者定量数据的过程和挑战。使用反身性主题分析对数据进行分析。他们开发了两个主题：首先，电话给本已认知复杂的互动增加了额外的困惑。其次，研究人员发现，很难识别出细微的迹象，这些迹象表明参与者在电话中及时情绪上升，以防止痛苦。研究人员使用了一些策略来支持参与者，这些策略可能不符合结构化面试的严格惯例，但却遵循了以人为本的原则。虽然在实践中，这可能是一种平衡参与者需求和定量研究要求的常见方法，但在文献中公开讨论这种权衡的研究很少见。如果从痴呆症患者远程收集数据的做法要在道德和诚信方面取得进展，就需要诚实、反思的报告。
There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants’ rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.
登录
查看更多内容
影响因子：
4.4
作者：
Bowling, A
通讯作者：
Bowling, A
DOI：
10.1177/1556264620974898
发表时间：
2021-03
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
--
作者：
Benson C;Friz A;Mullen S;Block L;Gilmore-Bykovskyi A
通讯作者：
Gilmore-Bykovskyi A
DOI：
10.1080/08989621.2018.1442218
发表时间：
2018-01-01
影响因子：
3.4
作者：
Cascio, M. Ariel;Racine, Eric
通讯作者：
Racine, Eric
影响因子：
3.4
作者：
Conrad, FG;Schober, MF
通讯作者：
Schober, MF
影响因子：
7.2
作者：
Cheung, YB;Goh, C;Wee, J
通讯作者：
Wee, J