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难以接触群体研究中的伦理和方法学挑战:以研究移民老年痴呆症照顾者为例。

Ethical and Methodological Challenges in Research With Hard-to-Reach Groups: Examples From Research on Family Caregivers for Migrant Older Adults Living With Dementia.

机构信息

Department of Health and Education, Alice Salomon University of Applied Science, Berlin, Germany.

Faculty of Health (Department of Human Medicine), Witten/Herdecke University, Witten, Germany.

出版信息

Gerontologist. 2022 Jul 15;62(6):823-831. doi: 10.1093/geront/gnab179.

Abstract

Family caregivers of migrants with dementia constitute a population group that is hard to reach for research participation due to factors such as shame about the disease and past experiences of discrimination. In this article, research-ethical challenges associated with participant recruitment and qualitative data collection among relatives of migrants with dementia are discussed. Over a period of 8 years, 3 studies were conducted to investigate the experiences of family caregivers for persons with dementia of Turkish descent in Germany. Across these studies, a total of 32 family caregivers were interviewed. In this article, based on the "Principles of Biomedical Ethics" according to Beauchamp and Childress (2009), research-ethical conflicts associated with sampling methods and the presence of third parties during qualitative interviews are discussed. The potential risks emanating from sampling strategies and the presence of third parties during interviews regarding the voluntary nature of study participation are examined. Additionally, this article formulates recommendations for ensuring truly voluntary participation and protecting both the participants (family caregivers) and relatives with dementia from harm. These practical recommendations aim to help future researchers to avoid ethical pitfalls and represent a roadmap for making necessary methodological decisions.

摘要

移民痴呆症患者的家庭照顾者是一个难以参与研究的人群,这是由于疾病带来的羞耻感和过去的歧视经历等因素造成的。本文讨论了与痴呆症移民亲属的参与者招募和定性数据收集相关的研究伦理挑战。在 8 年的时间里,进行了 3 项研究,旨在调查德国土耳其裔痴呆症患者家庭照顾者的经历。在这些研究中,共对 32 名家庭照顾者进行了访谈。在本文中,基于 Beauchamp 和 Childress(2009)的“生物医学伦理原则”,讨论了与抽样方法和定性访谈中第三方存在相关的研究伦理冲突。本文还研究了抽样策略和访谈中第三方存在对研究参与的自愿性质所带来的潜在风险。此外,本文还提出了确保真正自愿参与并保护参与者(家庭照顾者)和痴呆症亲属免受伤害的建议。这些实际建议旨在帮助未来的研究人员避免伦理陷阱,并为做出必要的方法学决策提供路线图。

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