1MGH Institute of Health Professions, School of Nursing, Boston, MA, USA.
Am J Alzheimers Dis Other Demen. 2013 Dec;28(8):763-8. doi: 10.1177/1533317513504613. Epub 2013 Oct 1.
To understand family members' perspectives on person- and family-centered end-of-life care provided to nursing home (NH) residents with advanced dementia, we conducted a qualitative follow-up interview with 16 respondents who had participated in an earlier prospective study, Choices, Attitudes, and Strategies for Care of Advance Dementia at End of Life (CASCADE). Family members of NH residents (N = 16) with advanced dementia participated in semistructured qualitative interviews that inquired about overall NH experience, communication, surrogate decision making, emotional reaction, and recommendations for improvement. Analysis identified 5 areas considered important by family members: (1) providing basic care; (2) ensuring safety and security; (3) creating a sense of belonging and attachment; (4) fostering self-esteem and self-efficacy; and (5) coming to terms with the experience. These themes can provide a framework for creating and testing strategies to meet the goal of person- and family-centered care.
为了了解家庭成员对提供给患有晚期痴呆症的养老院居民的以患者和家庭为中心的临终关怀的看法，我们对 16 名曾参与早期前瞻性研究“选择、态度和策略以护理晚期痴呆症患者”（Choices, Attitudes, and Strategies for Care of Advance Dementia at End of Life，CASCADE）的受访者进行了后续定性访谈。参与访谈的是养老院居民（N=16）的家庭成员，他们患有晚期痴呆症，访谈内容涉及整体养老院体验、沟通、代理决策、情绪反应以及改进建议。分析确定了家庭成员认为重要的 5 个方面：（1）提供基本护理；（2）确保安全；（3）营造归属感和依恋感；（4）培养自尊心和自我效能感；（5）接受体验。这些主题可以为制定和测试满足以患者和家庭为中心的护理目标的策略提供框架。
