Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands.
Department of Family Medicine, University of Pecs Medical School (UP), Pécs, Hungary.
BMC Palliat Care. 2014 Nov 21;13(1):52. doi: 10.1186/1472-684X-13-52. eCollection 2014.
The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.
METHODS/DESIGN: Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.
This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.
全球范围内患有晚期癌症和慢性病的人数有所增加。许多患者可能受益于姑息治疗，重点是优化面临危及生命的疾病相关问题的患者及其家属的生活质量。然而，姑息治疗服务的碎片化和不连续性常常导致姑息治疗效果不佳。为了克服这些问题，姑息治疗服务中越来越提倡采用综合护理方法的模式。尽管已经开发出几种姑息治疗综合模式和定义，但综合护理的效果仍在研究之中。对于构成成功姑息治疗整合的关键要素的了解仍然不足。本混合方法研究将检查患者、家庭照顾者和专业照顾者的经验，以深入了解构成成功姑息治疗整合的机制。
方法/设计：前瞻性多嵌入式案例研究。将在比利时、德国、匈牙利、荷兰和英国选择三到五个姑息治疗综合举措。数据收集将涉及社会网络分析（SNA）、患者日记、半结构化访谈和问卷调查：姑息治疗结局量表（POS）、Canhelp Lite、照顾者反应评估（CRA）。患者和家庭照顾者将在 3 个月的 4 个连续接触点中进行随访。患者每周将保留日记。每个举措将举行一次专业照顾者焦点小组会议。访谈和焦点小组将进行录音、转录，并使用 NVivo 10 进行定性分析。SPSS Statistics 20 将用于统计分析。
本研究将提供有关选定举措中各国姑息治疗整合的障碍、机会和良好实践的宝贵知识。这些知识可用于欧洲姑息治疗综合举措的基准测试。它将为国际姑息治疗服务提供科学证据，并有助于改善欧洲重病患者及其亲属的护理质量、生活质量和临终质量。
