School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
School of Nursing, Ulster University, Newtownabbey, UK.
J Adv Nurs. 2018 Jul;74(7):1595-1604. doi: 10.1111/jan.13576. Epub 2018 Apr 20.
To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia.
The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.
Descriptive qualitative study.
During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis.
Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.
The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.
探讨家庭照顾者在作为患有晚期痴呆症的亲属的最佳利益决策者时的照顾经验和准备情况。
痴呆症的患病率是一个全球性问题。一旦患有痴呆症的亲属被送进养老院，他们作为照顾者的角色并不一定会减轻。需要做出最佳利益决策，包括临终关怀决策，而达成这些选择可能具有挑战性。家庭照顾者在这一角色中的准备情况需要更好的理解。
描述性定性研究。
在 2015 年，对 20 名居住在养老院的患有晚期痴呆症的居民的家庭照顾者进行了 20 次半结构化访谈，然后使用 Braun 和 Clarke 的主题分析进行分析。
确定了三个主题：（1）照顾患有痴呆症的人。对照顾者整体福祉的影响以及他们作为最佳利益决策者的体验；（2）获得支持。正式和非正式网络的影响力；（3）照顾者和护理人员对痴呆症轨迹的感知知识和理解。
非正式照顾者的经验和准备情况反映了他们的个人反应，但所经历的痛苦突出表明，需要提供充足的支持，并提高护理人员的痴呆症专业知识，以最大限度地发挥他们在促进最佳利益决策方面的作用。这对护理实践以及服务用户和护理人员教育具有重要意义。考虑到痴呆症的全球影响，我们的发现与世界上类似的养老院具有国际相关性。
