School of Medicine, Cardiff University, Cardiff, UK.
School of Engineering, Cardiff University, Cardiff, UK.
BMJ Open. 2021 Jan 13;11(1):e041869. doi: 10.1136/bmjopen-2020-041869.
Involvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population.
In this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical and methodological considerations.
Focus groups are a widely implemented qualitative methodology, but their use, particularly in vulnerable neurodegenerative disease populations, is not straightforward. Although the risk of harm is generally low in focus group research, neurodegenerative disease populations are particularly vulnerable to issues relating to comprehension and their capacity to consent. Physical and cognitive impairments may also affect social interactions among participants and therefore impact data collection and analyses.
We offer a number of ethical and methodological recommendations to facilitate the processes of recruitment and data collection when conducting focus groups with neurodegenerative disease populations.
让弱势群体参与研究对于将循证医学的证据推广到所有人群至关重要。
在本通讯中，我们反思了我们以前的研究以及其他作者的研究，以确定和探讨关键的伦理和方法学考虑因素。
焦点小组是一种广泛实施的定性方法，但它们的使用，特别是在脆弱的神经退行性疾病人群中，并不简单。虽然焦点组研究中的伤害风险通常较低，但神经退行性疾病人群特别容易受到与理解和同意能力相关的问题的影响。身体和认知障碍也可能影响参与者之间的社会互动，从而影响数据收集和分析。
我们提供了一些伦理和方法学建议，以促进在神经退行性疾病人群中进行焦点小组时的招募和数据收集过程。
