Department of Public Health and Primary Care, Leiden University Medical Center, Hippocratespad 21, Gebouw 3, Postal zone V0-P, P.O. Box 9600, Leiden, 2300 RC, The Netherlands.
University Network for the Care sector Zuid-Holland, Leiden University Medical Center, Leiden, The Netherlands.
BMC Palliat Care. 2023 Sep 27;22(1):142. doi: 10.1186/s12904-023-01249-7.
Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner.
Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction.
In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful.
The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.
诸如预先护理计划（ACP）、技术或获得安乐死等干预措施可能会增加对生命末期的控制感。 在患有晚期痴呆症的人中，认知和身体功能的丧失限制了对护理的控制能力。 迄今为止，人们对痴呆症患者和其他相关人员对这些干预措施的可接受性知之甚少。 本研究将从痴呆症患者和其他相关人员的角度，检查四种包含争取控制元素的临终干预措施的跨文化可接受性及其相关因素。 此外，我们还报告了动画视频短片的开发和试点测试，这些短片以标准化的方式解释干预措施。
横断面混合方法病例研究。 我们评估了两种 ACP 方法、生命末期的技术使用和安乐死在痴呆症患者、他们的家庭照顾者和医生中的可接受性，在六个国家（荷兰、日本、以色列、美国、德国和瑞士）进行研究。 我们的目标是每个国家纳入 80 名参与者，包括 50 名医生、15 名痴呆症患者和 15 名家庭照顾者。 在观看每个动画视频后，参与者将接受有关干预措施可接受性的采访。 我们将检查组间和国家间的可接受性差异，并探索其他潜在的相关因素，包括表明生活观、个性、对痴呆症的看法和人口统计学的变量。 在试点研究中，参与者对短片和工具的理解和清晰度发表了评论。 根据他们的反馈，动画视频的脚本得到了澄清、简化和调整，以避免偏向特定方向。
在试点研究中，痴呆症患者、他们的家庭照顾者和其他老年人发现改编后的动画视频和工具易于理解、可接受、可行且不会造成负担。CONT-END 可接受性研究将从重要利益相关者的角度提供有关痴呆症护理中干预措施的跨文化可接受性的见解。 这有助于更好地使干预措施与偏好保持一致。 该研究还将更深入地了解在痴呆症中何时何地将控制感视为有益或可能有害。
CONT-END 可接受性研究最初于 2019 年 8 月 31 日在荷兰试验登记处（NL7985）注册，并可在国际临床试验注册平台上找到。
