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Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams
Authors:Mariëtte N. Verkissen  Kathleen Leemans  Lieve Van den Block  Luc Deliens  Joachim Cohen
Affiliation:1. End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium;2. Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
Abstract:

Objective

To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).

Methods

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.

Results

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.

Conclusion

Although information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service.

Practice implications

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.
Keywords:Cancer  Oncology  End of life  Palliative care  Information provision  Shared decision-making  Tailored care  Relatives
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