Cross‐cultural acceptability of interventions at the end of life in dementia: Video vignette study design and pilot evaluation (ERC CONT‐END WP1)

Abstract

Background In dementia, gradual cognitive and physical decline imply that control over life is typically lost. Interventions such as advance care planning (ACP), technology, or‐more extreme‐euthanasia can increase control over the end of life. So far, little is known about acceptability of these interventions from the perspective of persons with dementia and others involved. This study examines the cross‐cultural acceptability of four end‐of‐life interventions in dementia which contain an element of striving for control. We describe the development and pilot‐testing of video vignettes that explain interventions in a standardized manner. Method The CONT‐END study Work Package 1 (NTR 7985) employs a cross‐sectional mixed‐methods design to assess acceptability of two types of ACP, technology use at the end of life and euthanasia, in three groups (persons with dementia, their family caregivers and physicians) in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). Participants (150 per country) are interviewed about acceptability of the interventions. We will examine different acceptability by group and country and explore potentially associated factors such as coping style. We are pilot testing the acceptability, feasibility and burden of four video vignettes in persons with dementia and their family caregivers in the Netherlands. Result We will demonstrate the video vignettes to explain the interventions. The first interviews indicate that persons with dementia and their family caregivers find the scripts of the video vignettes understandable, acceptable, feasible and not burdensome. They additionally commented on the subject matter in that they felt a current need for ACP on, for example, hospitalization, but would prefer to discuss need for technology and euthanasia later. We will present the pilot results and discuss hypotheses about acceptability of the four interventions in the three groups and six countries. Conclusion The CONT‐END study will provide insight into cross‐cultural acceptability of interventions in dementia care from the perspective of persons with dementia, their family caregivers and physicians. 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.

Acceptability and feasibility of video-based health education for maternal and infant health in Dirashe District, South Ethiopia: A qualitative study

“…Partner attitudes affected the participants' level of commitment, and their involvement in the video intervention was also reported as a key factor in improving the intervention. A similar finding was reported in Uganda, where video-based health education interventions that aimed to enhance perinatal care and uptake of health services were more accepted when the partner was involved and had a supportive attitude [28]. Community and family support are important facilitators of acceptability.…”

“…The acceptability in this study considered several indicators: i) relevance (i.e., whether the video intervention answers the needs of the mothers and community) [ 25 , 26 ], ii) how easy it was to implement the intervention/practicability [ 22 , 27 , 28 ]; iii) was it culturally appropriate [ 25 – 28 ], and vi) was it easy to understand [ 25 ]. The results of our study are in line with previous studies [ 22 , 28 ] that assessed acceptability from different perspectives. The messages delivered in the video-based health education of the current trial were reportedly relevant, understandable, culturally appropriate, and easy to implement.…”

“…The educational package delivered in a video form was locally prepared using multiple approaches, such as testimony, comedy, and dramas and/or roleplays, in the form of questions and answers, group discussions, and deductive approaches. Culturally respectful interventions are more likely to be accepted [ 22 , 27 , 28 ]. A study conducted in Zambia identified that acceptability is increased, and behavior change is enhanced when video-based health education interventions are implemented in the same setting and use similar cultural characteristics [ 26 ].…”

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

“…They suggested adding hand-outs and making the euthanasia procedure more clear for non-Dutch viewers. The English technology video was presented at the Alzheimer’s Association International Conference 2020 [ 85 ] to collect feedback from a professional audience. They deemed the animation video suitable.…”