Dening Karen Harrison, Greenish Wendy, Jones Louise, Mandal Uttara, Sampson Elizabeth L
Dementia UK, London, UK.
BMJ Support Palliat Care. 2012 Jun;2(2):103-7. doi: 10.1136/bmjspcare-2011-000178. Epub 2012 Mar 1.
People with dementia may experience poor quality end-of-life care. The complex health and social care system may not meet their needs. The authors' objectives were to identify perceived and real barriers that prevent people with dementia and their carers receiving end-of-life care of acceptable quality.
A whole-system qualitative study as part of a rapid participatory appraisal. The authors used semistructured interviews and focus groups with recently bereaved family carers of a person with dementia and a wide range of health and social care staff (50 participants). Thematic content analysis was used to analyse data and to identify barriers.
Five areas were identified as barriers to providing good end-of-life care: impact of hospitalisation, care pathways, advance care planning, impact on carers, staff skills and training. A wide range of health and social professionals provided end-of-life care to people with dementia but with little coordination or knowledge of each other's activity or remit. Care was fragmented and ad hoc leading to crises and inappropriate hospital admissions. Staff lacked confidence and requested more training. Many of the identified barriers were underpinned by feelings of uncertainty regarding disease trajectory and the perceived futility of interventions. Areas of good practice were specialist nurse support to family carers and 'in reach' to nursing homes.
Qualitative methods of service evaluation facilitated a broader and deeper understanding of a range of perspectives, which, with other components of rapid participatory appraisal, generated potential solutions to improve care.
痴呆症患者临终关怀的质量可能较差。复杂的医疗和社会护理系统可能无法满足他们的需求。作者的目标是确定阻碍痴呆症患者及其护理人员获得可接受质量临终关怀的感知障碍和实际障碍。
作为快速参与式评估的一部分进行的全系统定性研究。作者对近期失去亲人的痴呆症患者家庭护理人员以及广泛的医疗和社会护理人员（50名参与者）进行了半结构化访谈和焦点小组讨论。采用主题内容分析法分析数据并确定障碍。
确定了五个方面是提供优质临终关怀的障碍：住院的影响、护理路径、预先护理计划、对护理人员的影响、工作人员的技能和培训。众多医疗和社会专业人员为痴呆症患者提供临终关怀，但彼此之间几乎没有协调，也不了解对方的活动或职责范围。护理工作分散且临时，导致危机和不适当的住院治疗。工作人员缺乏信心，要求更多培训。许多已确定的障碍是由于对疾病轨迹的不确定性以及对干预措施的徒劳感所致。良好实践的领域包括对家庭护理人员的专科护士支持以及对养老院的“延伸服务”。
服务评估的定性方法有助于更广泛、更深入地理解一系列观点，这些观点与快速参与式评估的其他组成部分一起，产生了改善护理的潜在解决方案。
