Begley Amanda, Pritchard-Jones Kathy, Biriotti Maurice, Kydd Anna, Burdsey Tim, Townsley Emma
UCLPartners, London, UK.
SHM London, London, UK.
BMJ Open. 2014 Oct 16;4(10):e005550. doi: 10.1136/bmjopen-2014-005550.
In spite of considerable attention, patients diagnosed with cancer continue to report poor experiences of care. The root causes of this remain unclear. This exploratory study aimed to investigate new ways of understanding the experience of patients with cancer, using a literary-based research approach.
Interviews were undertaken with four patients diagnosed with high-grade brain cancers at least 6 months from diagnosis and with people (n=5) identified by the patients as important in their care pathway. Interview transcripts were analysed by humanities academics as pieces of literature, where each patient's story was told from more than one person's perspective. The academics then came together in a facilitated workshop to agree major themes within the patient experiences. The themes were presented at a patient and carer event involving 70 participants to test the validity of the insights.
Insights into the key issues for patients with cancer could be grouped into six themes: accountability; identity; life context; time; language; rigour and emotion. Patients often held a different perspective to the traditionally held medical views of what constitutes good care. For example, patients did not see any conflict between a doctor having scientific rigour and portraying emotion.
One key feature of the approach was its comparative nature: patients often held different views from those traditionally held by physicians of what constitutes health and good outcomes. This revealed aspects that may be considered by healthcare professionals when designing improvements. Proposals for further testing are discussed, with a particular emphasis on the need for sensitivity to individual differences in experiences.
尽管受到了广泛关注，但被诊断患有癌症的患者仍不断报告护理体验不佳。其根本原因尚不清楚。这项探索性研究旨在采用基于文学的研究方法，探寻理解癌症患者体验的新途径。
对4名诊断为高级别脑癌且自诊断起至少已过去6个月的患者，以及患者认为在其护理过程中很重要的人员（n = 5）进行了访谈。人文学科的学者将访谈记录作为文学作品进行分析，从多个视角讲述每位患者的故事。然后，学者们齐聚一个推动式研讨会上，就患者体验中的主要主题达成共识。这些主题在一个有70名参与者的患者及护理者活动中展示，以检验见解的有效性。
对癌症患者关键问题的见解可归纳为六个主题：责任；身份；生活背景；时间；语言；严谨性与情感。患者对传统医学所认为的优质护理的看法往往不同。例如，患者并不认为医生具备科学严谨性与表达情感之间存在冲突。
该方法的一个关键特征是其比较性质：患者对健康和良好结果的构成往往持有与医生传统观点不同的看法。这揭示了医疗保健专业人员在设计改进措施时可能会考虑的方面。讨论了进一步测试的建议，特别强调需要对个体体验差异保持敏感。
