确定痴呆症患者参与研究的能力:关于研究人员信心、能力和培训需求的电子调查研究。

IF 3 1区 哲学 Q1 ETHICS BMC Medical Ethics Pub Date : 2024-05-28 DOI:10.1186/s12910-024-01056-6
Sarah Griffiths, Victoria Shepherd, Anna Volkmer
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引用次数: 0

摘要

背景:研究人员必须在某人能够参与研究之前,确定其是否有能力同意参与研究。英格兰和威尔士的《心智能力法案》及相应的《行为准则》为这一过程提供了一些指导,但研究人员发现,当一个人有复杂的认知或交流需求时,很难确定其是否有能力同意。本研究旨在了解招募痴呆症患者参与研究项目的研究人员的经验和意见,为今后培训资源的开发提供参考:通过英格兰和威尔士的社交媒体和研究网络发布了一项混合方法横断面电子调查。调查持续十周,包括开放式和封闭式问题,探讨受访者在征得痴呆症患者同意的情况下确定行为能力的信心、他们对所经历的培训和支持的看法以及对未来培训和支持需求的建议:来自英格兰和威尔士的 60 名受访者完成了调查。尽管 75% 的受访者在确定痴呆症患者同意参与研究的能力方面有过经验,但只有 13% 的受访者认为自己对此 "非常有信心"。对公开回复的定性内容分析产生了六个主题,解释了研究人员在这一领域的信心、能力和未来培训需求:(1) 研究人员的不确定性,(2) 缺乏时间,(3) 平衡信息的复杂性与可及性,(4) 守门人,(5) 现有的促进因素,(6) 未来培训设想:研究人员将受益于与痴呆症患者就同意问题进行对话的专门培训。痴呆症患者的行为能力可能会有波动,尽管有护理人员的支持,但研究人员对于如何确定患者是否有能力理解或领会他们在同意过程中提供的信息几乎没有实际指导。鉴于痴呆症研究中大型复杂试验的发展,为痴呆症患者及其家人工作的研究人员制定具体实用的指导和培训迫在眉睫。
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Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs.

Background: Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources.

Methods: A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs.

Results: 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training.

Conclusions: Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.

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来源期刊
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
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