Elliott Margaret, Harrington Jane, Moore Kirsten, Davis Sarah, Kupeli Nuriye, Vickerstaff Victoria, Gola Anna, Candy Bridget, Sampson Elizabeth L, Jones Louise
Marie Curie Palliative Care Research Unit, Division of Psychiatry, University College London Medical School, London, UK.
BMJ Open. 2014 Jun 17;4(6):e005661. doi: 10.1136/bmjopen-2014-005661.
In the UK approximately 700,000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability.
An 'Interdisciplinary Care Leader (ICL)' will work within two care homes, alongside staff and associated professionals to facilitate service integration, encourage structured needs assessment, develop the use of personal and advance care plans and support staff training. We will use qualitative and quantitative methods to collect data for a range of outcome and process measures to detect effects on individual residents, family carers, care home staff, the intervention team, the interdisciplinary team and wider systems. Analysis will include descriptive statistics summarising process and care home level data, individual demographic and clinical characteristics and data on symptom burden, clinical events and quality of care. Qualitative data will be explored using thematic analysis. Findings will inform a future phase II trial.
Ethical approval was granted (REC reference 14/LO/0370). We shall publish findings at conferences, in peer-reviewed journals, on the Marie Curie Cancer Care website and prepare reports for dissemination by organisations involved with end-of-life care and dementia.
在英国，约有70万人患有痴呆症，65岁以上人群中有三分之一将死于痴呆症。痴呆症患者在生命末期可能会得到质量较差的护理。我们采用了一种现实主义方法，并运用混合方法来开发一种复杂的干预措施，以改善对晚期痴呆症患者及其家庭护理人员的护理。使用兰德加州大学恰当性方法达成了对干预内容的共识，并将其映射到过程和影响的社会学理论上。核心组成部分包括：（1）促进综合护理；（2）教育、培训和支持；（3）来自专员和护理提供者的投入。我们展示了一项探索性I期研究的方案，以实施组成部分1和2，以便了解干预措施在实际中的运作方式，并评估其可行性和可接受性。
一名“跨学科护理领导者（ICL）”将在两家养老院开展工作，与工作人员及相关专业人员合作，以促进服务整合，鼓励进行结构化需求评估，推动个人护理计划和预立医疗照护计划的使用，并支持工作人员培训。我们将使用定性和定量方法收集一系列结果和过程指标的数据，以检测对个体居民、家庭护理人员、养老院工作人员、干预团队、跨学科团队及更广泛系统的影响。分析将包括描述性统计，总结过程和养老院层面的数据、个体人口统计学和临床特征以及症状负担、临床事件和护理质量的数据。将使用主题分析来探究定性数据。研究结果将为未来的II期试验提供参考。
已获得伦理批准（研究伦理委员会参考号14/LO/0370）。我们将在会议上、同行评审期刊上、玛丽居里癌症护理网站上发表研究结果，并为参与临终护理和痴呆症护理的组织编写传播报告。
