Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, Milan, Italy.
Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, Modena, Italy.
Oncologist. 2022 Mar 4;27(2):e168-e175. doi: 10.1093/oncolo/oyab027.
Oncologists' fear of taking away hope from patients when proposing early palliative care (EPC) is a barrier to the implementation of this model. This study explores hope perceptions among bereaved caregivers of onco-hematologic patients who received EPC.
Open-ended questionnaires were administered to 36 primary caregivers of patients who received EPC (26 solid and 10 hematologic cancer patients; mean age: 51.4 years, range age: 20-74), at 2 cancer centers, 2 months to 3 years after a patient death. Definitions of hope in the caregivers' narratives were analyzed through a directed approach to content analysis. Results were complemented with automated lexicographic analysis.
Caregivers perceived hope mainly as resilience and as expectations based on what they were told about the patients' clinical conditions. Their hope was bolstered by trusting relationships with the healthcare teams. EPC interventions were recalled as the major support for hope, both during the illness and after the death of the patient. The automated quantitative lexical analysis provided deeper insights into the links between hope, truth, and trust.
Our findings suggest that telling the truth about an incurable onco-hematologic disease and beginning EPC might be the combination of factors triggering hope in the setting of incurable cancer.
肿瘤学家在提出早期姑息治疗(EPC)时担心会使患者失去希望,这是该模式实施的障碍。本研究探讨了接受 EPC 的肿瘤血液病患者的临终照顾者对希望的看法。
在两家癌症中心,对 26 名实体瘤和 10 名血液癌患者的 36 名主要照顾者(平均年龄:51.4 岁,年龄范围:20-74 岁)进行了开放式问卷调查,在患者死亡后 2 个月至 3 年内进行。通过有针对性的内容分析方法对照顾者叙述中的希望定义进行了分析。结果辅以自动词汇分析。
照顾者主要将希望视为韧性,并将其视为根据患者临床状况所告知的期望。他们对医疗团队的信任关系增强了他们的希望。EPC 干预措施被回忆为在疾病期间和患者死亡后支持希望的主要因素。自动定量词汇分析提供了对希望、真相和信任之间联系的更深入见解。
我们的研究结果表明,对不可治愈的肿瘤血液病患者说实话并开始 EPC 可能是触发不可治愈癌症患者希望的因素组合。