Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing

BMC Palliative Care

Study Protocol

Perla Werner¹  David R. Mehr²  Lukas Radbruch³  Xu Jingyuan⁴  Jenny T. van der Steen⁵  Miharu Nakanishi⁶  Hanneke J.A. Smaling⁷  Wilco P. Achterberg⁸  Jan Gaertner⁹  Shiri Shinan-Altman^1,10 

[1] Department of Community Mental Health, University of Haifa, Haifa, Israel;Department of Family and Community Medicine, University of Missouri, Columbia, MO, USA;Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany;Centre for Palliative Medicine, Helios Hospital Bonn/Rhein-Sieg, Bonn, Germany;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, Hippocratespad 21, Gebouw 3, Postal zone V0-P, 2300 RC, Leiden, The Netherlands;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, Hippocratespad 21, Gebouw 3, Postal zone V0-P, 2300 RC, Leiden, The Netherlands;Department of Primary and Community Care, Radboud university medical center, Nijmegen, The Netherlands;Radboudumc Alzheimer Center, Nijmegen, The Netherlands;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, Hippocratespad 21, Gebouw 3, Postal zone V0-P, 2300 RC, Leiden, The Netherlands;Department of Psychiatric Nursing, Tohoku University Graduate School of Medicine, Sendai, Japan;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, Hippocratespad 21, Gebouw 3, Postal zone V0-P, 2300 RC, Leiden, The Netherlands;University Network for the Care sector Zuid-Holland, Leiden University Medical Center, Leiden, The Netherlands;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, Hippocratespad 21, Gebouw 3, Postal zone V0-P, 2300 RC, Leiden, The Netherlands;University Network for the Care sector Zuid-Holland, Leiden University Medical Center, Leiden, The Netherlands;Center for Old Age Medicine, Leiden University Medical Center, Leiden, The Netherlands;Palliative Care Center Hildegard, Basel, Switzerland;Faculty of Medicine, University of Basel, Basel, Switzerland;School of Social Work, Bar Ilan University, Ramat Gan, Israel;

关键词: Palliative care;    Dementia;    End of life;    Euthanasia;    Assisted death;    Advance care planning;    Technology;   

DOI  :  10.1186/s12904-023-01249-7

 received in 2023-08-18, accepted in 2023-08-22,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundInterventions 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.MethodsCross-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.DiscussionIn 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.Trial registrationThe 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.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023