End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium; Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.
Patient Educ Couns. 2019 Apr;102(4):768-775. doi: 10.1016/j.pec.2018.11.012. Epub 2018 Nov 19.
To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).
A cross-sectional survey was conducted within four multidisciplinary palliative homecare teams (HCTs), 17 hospital-based palliative care units (PCUs) and 13 hospital-based mobile palliative support teams (PSTs) in Belgium. During four measurement periods, structured questionnaires were administered to people being guided by PCSs and relatives of patients who had died while under the care of PCSs.
In total, 628 patients (80%) and 980 relatives (55%) responded; 73-82% and 75-77% respectively reported having received the right amount of information. Compared with those receiving care within a PCU, those being supported by a PST were more likely to report suboptimal information provision and decision-making. Relatives of those who had died while under the guidance of a PST were also more likely to report suboptimal information provision than their PCU counterparts.
Although information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service.
Information provided within PCUs offering highly personalised, continuous care appears to both groups more satisfactory than that provided by palliative care teams mainly supporting care staff.
探讨癌症患者和丧亲亲属如何评估专科姑息治疗服务（PCSs）提供的信息。
在比利时的四个多学科姑息家庭护理团队（HCT）、17 个医院姑息护理病房（PCU）和 13 个医院移动姑息支持团队（PST）中进行了一项横断面调查。在四个测量期间，向接受 PCSs 指导的人员以及在 PCSs 护理下死亡的患者的亲属发放了结构化问卷。
共有 628 名患者（80%）和 980 名亲属（55%）做出了回应；分别有 73%-82%和 75%-77%的人报告说收到了适量的信息。与在 PCU 接受护理的患者相比，接受 PST 支持的患者更有可能报告信息提供和决策不理想。在 PST 指导下死亡的患者的亲属也比在 PCU 接受护理的患者更有可能报告信息提供不理想。
尽管 PCSs 为癌症患者和亲属提供的信息总体上得到了积极评价，但评价取决于服务类型。
在提供高度个性化、持续护理的 PCU 内提供的信息似乎比主要支持护理人员的姑息治疗团队提供的信息更令两组人员满意。
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