Hannon Breffni, Swami Nadia, Rodin Gary, Pope Ashley, Zimmermann Camilla
1 Division of Medical Oncology, Department of Medicine, University of Toronto, Toronto, ON, Canada.
2 Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.
Palliat Med. 2017 Jan;31(1):72-81. doi: 10.1177/0269216316649126. Epub 2016 Aug 19.
Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective.
The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care.
Qualitative grounded theory study using individual interviews.
SETTING/PARTICIPANTS: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team.
Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention.
The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.
早期姑息治疗可改善生活质量和护理满意度，越来越多地被推荐用于晚期癌症患者。然而，从患者和护理人员的角度对接受早期姑息治疗的体验了解甚少。
本定性研究的目的是从参与者的角度确定接受早期姑息治疗的体验以及该治疗的要素。
采用个人访谈的定性扎根理论研究。
地点/参与者：该研究在一家综合癌症中心进行。来自早期姑息治疗与标准肿瘤护理的整群随机对照试验干预组的患者（n = 26）和护理人员（n = 14）参与了定性访谈。参与者被要求对他们的生活质量、干预期间提供的护理质量以及他们与姑息治疗团队的经历发表评论。
参与者表示在疾病经历和医疗系统的应对过程中得到了支持和指导。早期姑息治疗的具体要素包括及时、个性化的症状管理；对患者和护理人员的全面支持；决策指导；以及为未来做准备。有症状的患者特别重视对其身体问题的及时关注，而无症状的患者则重视护理的其他要素。尽管有三名患者对目前是否需要姑息治疗持矛盾态度，但未报告干预导致的痛苦。
参与者描述的护理要素可用于开发、支持和完善癌症患者早期姑息治疗模式。
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