Sampson Elizabeth, Mandal Uttara, Holman Amanda, Greenish Wendy, Dening Karen Harrison, Jones Louise
Dementia and Cognitive Disorders, Barnet Enfield and Haringey Mental Health Trust, London, UK.
BMJ Support Palliat Care. 2012 Jun;2(2):108-14. doi: 10.1136/bmjspcare-2011-000177. Epub 2012 Mar 31.
People with dementia and their carers may experience poor end of life care, often having to navigate complex health and social care systems. The objectives of this study were to identify: (1) barriers for people with dementia and their carers in accessing good quality end of life care and (2) cost-effective ways of enabling improvements.
Rapid participatory appraisal gains information from different sources across a single locality. Participants were carers of people who had died of dementia, health and social care staff. Care pathways were modelled. Barriers identified from qualitative work were triangulated with detailed case audit and economic analysis. Results were presented to the stakeholder group who generated feasible solutions.
Nine cases were audited (predominantly white British male subjects, 64-84 years with advanced dementia). Six resided at home, one in a care home and two in continuing care wards. Five died in their place of residence and four in the acute hospital. Care costs over the 6 months before death were higher in care homes or continuing care (£37 029) than for those living at home (£19 854). Synthesis of qualitative and quantitative data generated areas for improvement: patient pathway, impact of acute hospitalisation, economic costs, advance care planning, impact on carers, skills and training of health and social care staff.
This method provided evidence for stimulating change in the health and social care system. Following the patient journey and identifying barriers to care allowed local context to be considered. Service providers generated solutions enabling 'ownership' of changes to service delivery.
患有痴呆症的患者及其护理人员可能会经历糟糕的临终关怀，常常要应对复杂的医疗和社会护理系统。本研究的目标是确定：（1）痴呆症患者及其护理人员在获得高质量临终关怀方面的障碍，以及（2）实现改善的具有成本效益的方法。
快速参与式评估从单个地区的不同来源获取信息。参与者包括死于痴呆症患者的护理人员、医疗和社会护理人员。对护理路径进行了建模。从定性研究中确定的障碍与详细的病例审核和经济分析进行了三角互证。研究结果提交给了能够提出可行解决方案的利益相关者群体。
审核了9个病例（主要是英国白人男性患者，年龄在64 - 84岁，患有晚期痴呆症）。其中6人在家中居住，1人在养老院，2人在持续护理病房。5人在其居住场所死亡，4人在急症医院死亡。死亡前6个月，养老院或持续护理机构的护理费用（37029英镑）高于在家居住者（19854英镑）。定性和定量数据的综合分析得出了需要改进的方面：患者路径、急症住院的影响、经济成本、预先护理计划、对护理人员的影响、医疗和社会护理人员的技能与培训。
该方法为推动医疗和社会护理系统的变革提供了证据。追踪患者就医过程并确定护理障碍能够考虑当地实际情况。服务提供者提出了能够让服务提供变革得以“自主实施”的解决方案。
