Davies Nathan, Maio Laura, Rait Greta, Iliffe Steve
Research Department of Primary Care and Population Health, University College London, London, UK
Research Department of Primary Care and Population Health, University College London, London, UK.
Palliat Med. 2014 Jul;28(7):919-930. doi: 10.1177/0269216314526766. Epub 2014 Mar 13.
People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care.
We explored what quality end-of-life care for dementia is from the perspective of family carers.
A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council.
Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken.
Eight studies were included. There was an overarching theme of 'A family's belief of death and their choice of treatment'. Three further themes were then identified to explain family carers' beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers' ability to think about death and dying.
It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this.
痴呆症患者并不总是能获得高质量的临终关怀，疼痛治疗不足、激进的医疗干预措施以及临终关怀服务获取有限等情况很常见。家庭护理人员通常为痴呆症患者提供大部分的非正式护理，因此他们最有资格对护理质量发表意见。
我们从家庭护理人员的角度探讨了痴呆症患者高质量的临终关怀是什么样的。
采用系统方法对定性证据进行综述，运用叙述性综合、列表、研究文本描述和主题分析等工具，遵循经济和社会研究委员会的指导方针。
在MEDLINE、EMBASE、CINAHL、SCIE和PsycINFO中检索1990年至2012年4月的研究关键词和主题词，并于2013年5月更新。检查参考文献列表并进行引文检索。
纳入了八项研究。有一个总体主题是“家庭对死亡的信念及其治疗选择”。然后确定了另外三个主题来解释家庭护理人员的信念：与专业人员的关系是护理质量的核心组成部分；护理的情感和承诺压力，以及最后，家庭护理人员思考死亡和临终的能力。
从家庭护理人员的角度很难界定什么构成了痴呆症患者高质量的临终关怀。他们在文献中表达的观点似乎显示出护理和治疗偏好的更多差异以及他们对此的不确定性。
