National Institute of Public Health, 6174University of Southern Denmark, Copenhagen, Denmark.
Dementia (London). 2023 Jan;22(1):28-45. doi: 10.1177/14713012221131856. Epub 2022 Oct 7.
Numerous dementia-specific guidelines are offered to support people with dementia and their informal caregivers in dealing with dementia. However, the extent to which such guidelines address ethical issues and provide guidance for dealing with the issues has not yet been assessed. This study investigates the extent to which ethical issues are addressedin those guidelines, which ethical themes are considered and whatrecommendations are offered. We analysed Danish collected via onlinesearch engines and manual contact with relevant governmental, municipal and patient organisations from November 2020 to January 2021. To assess the scope of ethical issues in such guidelines, we devised an analytical framework using Beauchamp and Childress's four principles of biomedical ethics and a data-processing method inspired by systematic reviews. We collected a total 653 dementia guidelines and screened them using formal inclusion criteria, such as publication year, target group and public availability. The guidelines that satisfied these criteria were screened for content related to ethical issues and recommendations. The guidelines that addressed ethical issues were then coded in NVivo 12 and analysed using thematic text analysis. In total, 59 guidelines satisfied the formal inclusion criteria. Among these guidelines, 15 addressed ethical issues, which fell into four transversal themes: (1) being open about the disease, (2) accepting help, (3) the line between dignified behaviour and overstepping boundaries and (4) decision-making and autonomy. The ethical issues addressed in Danish dementia-specific guidelines were diverse. However, the addressed issues did not represent a comprehensive spectrum of ethical issues as identified in relevant literature, and only a few guidelines contained substantial ethical content. In conclusion, this study indicates that the need for guidance on ethical issues is not being met by dementia-specific guidelines and that further research is required to provide additional ethical guidance that benefits people with dementia and their informal caregivers.
有许多专门针对痴呆症的指南旨在为痴呆症患者及其非专业护理人员提供支持。然而，这些指南在多大程度上涉及伦理问题并为处理这些问题提供指导尚未得到评估。本研究调查了这些指南在多大程度上涉及伦理问题，考虑了哪些伦理主题以及提供了哪些建议。我们于 2020 年 11 月至 2021 年 1 月期间通过在线搜索引擎和与相关政府、市政和患者组织的人工联系收集了丹麦的数据。为了评估这些指南中伦理问题的范围，我们使用 Beauchamp 和 Childress 的生物医学伦理学四项原则设计了一个分析框架，并使用受系统评价启发的数据处理方法。我们总共收集了 653 份痴呆症指南，并使用正式的纳入标准（如出版年份、目标群体和公开可用性）对其进行筛选。符合这些标准的指南将被筛选出与伦理问题和建议相关的内容。然后，将涉及伦理问题的指南在 NVivo 12 中进行编码，并使用主题文本分析进行分析。总共有 59 份指南符合正式的纳入标准。在这些指南中，有 15 份涉及伦理问题，分为四个横向主题：（1）公开疾病情况，（2）接受帮助，（3）有尊严的行为和越界之间的界限，（4）决策和自主权。丹麦专门针对痴呆症的指南中涉及的伦理问题多种多样。然而，所涉及的问题并未代表相关文献中确定的伦理问题的全面范围，并且只有少数指南包含实质性的伦理内容。总之，本研究表明，针对痴呆症的指南并未满足对伦理问题的指导需求，需要进一步研究以提供有益于痴呆症患者及其非专业护理人员的额外伦理指导。
