Cancer and Palliative Care Research and Evaluation Unit,School of Medicine,The University of Western Australia,Nedlands,Western Australia,Australia.
Health Promotion Evaluation Unit,School of Sports Science, Exercise, and Health,The University of Western Australia,Perth,Western Australia,Australia.
Palliat Support Care. 2018 Apr;16(2):198-208. doi: 10.1017/S1478951517000177. Epub 2017 Mar 30.
ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.
Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.
Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.
Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).
While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.
摘要
照顾者满意度和体验调查有助于医疗专业人员了解、衡量和改善为患者及其家属提供的护理质量。
我们旨在探讨照顾者对澳大利亚专科姑息治疗服务所获得护理的看法。
在澳大利亚姑息治疗结果协作组织注册的服务中，接受姑息治疗的患者的照顾者受邀参加照顾者调查。该调查包括 FAMCARE-2 和 Ongoing Needs Identification:Caregiver Profile 问卷中的四个项目。
来自 49 个服务的 1592 名照顾者完成了调查。大多数受访者报告满意度高，体验积极。从社区姑息治疗团队获得护理的照顾者对身体症状和舒适度的管理（比值比 [OR] = 0.29；95%置信区间 [CI95%] = 0.14，0.59）、患者心理护理（OR = 0.56；CI95% = 0.32，0.98）和家庭支持（OR = 0.52；CI95% = 0.35，0.77）的满意度低于住院患者的照顾者。如果年龄超过 60 岁，照顾者获得有关可用支持服务（OR = 0.98；CI95% = 0.97，0.98）和照顾者报酬（OR = 0.99；CI95% = 0.98，1.00）的信息需求的满足程度较低。此外，如果位于偏远地区（OR = 0.41；CI95% = 0.25，0.64），照顾者获得有关照顾者报酬的信息也较少。此外，如果接受社区服务的照顾者接受了实践培训，他们报告说，在支持他们照顾患者方面，信息提供不足（OR = 0.60；CI95% = 0.45，0.81）。
虽然我们的研究表明，在所有护理领域，照顾者的体验都积极且满意，但在症状管理以及患者和照顾者支持方面，姑息治疗的提供仍有改进的空间，特别是在社区环境中。照顾者调查可以促进识别和评估患者和照顾者的体验、满意度、痛苦和未满足的需求。
