University of Utah College of Nursing, Salt Lake City, Utah, USA.
Brown University School of Public Health, Center for Long-Term Care Quality and Innovation, Providence, Rhode Island, USA.
J Palliat Med. 2022 Jun;25(6):880-887. doi: 10.1089/jpm.2021.0111. Epub 2021 Dec 28.
Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Randomized wait-list control. Assisted living and nursing home residents in the United States, and their family members and caregivers. Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. Thirty-six resident videos were shared with family ( = 50) and staff ( = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, < 0.001; staff: Beta = 0.35, < 0.001). Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.
我和我的愿望涉及到患有痴呆症的人谈论他们的临终（EOL）护理偏好的视频。本研究旨在检查这些视频中辅助生活社区和护理院居民表达的 EOL 治疗和心理社会偏好与家庭和工作人员对偏好的了解的一致性。 随机等待名单对照。 居住在美国的辅助生活和护理院居民，以及他们的家庭成员和护理人员。 五种 EOL 治疗偏好（心肺复苏术或 CPR、呼吸机、管饲、生命支持和疼痛治疗）和四种接近 EOL 的心理社会偏好（让家人在床边、从事信仰活动如祈祷、让宠物在床边、以及从事阅读或听音乐等活动）从居民的视频中提取，并通过家庭和工作人员调查进行记录。 在护理计划会议期间，将 36 名居民的视频与家人（ = 50）和工作人员（ = 38）共享。居民表达的 EOL 治疗偏好与家庭和工作人员的知识之间的一致性有所提高，结果显示在分享视频时存在治疗效果（家庭：β = 0.21， < 0.001；工作人员：β = 0.35， < 0.001）。 我们的研究结果表明，分享“我和我的愿望”视频可以提高辅助生活和护理院居民的家庭和工作人员对 EOL 心理社会和治疗偏好的一致性，这些居民患有痴呆症。传达居民偏好的个性化视频可以帮助非正式和正式护理人员了解居民的个性，并促进一致的护理。临床试验注册号 NCT03861429。
