Department of Cancer Studies and Molecular Medicine, University of Leicester, UK.
Br J Health Psychol. 2015 May;20(2):261-73. doi: 10.1111/bjhp.12096. Epub 2014 Mar 15.
The aim of this paper was to explore how patients experience an initial oncology consultation. This study was part of a larger mixed methods research project designed to address the issue of improving communication and enhancing patient satisfaction with oncology consultations.
Interpretive phenomenological analysis was used to interpret the participants' meanings of their experiences in their initial consultation. It is an idiographic approach that focuses in depth on a small set of cases in order to explore how individuals make sense of a similar experience. This retains the complexity and diversity of experiences.
In the larger study, semi-structured interviews were carried out with 36 patients as soon as possible after a consultation in oncology to explore their experiences. Five cases were selected for this study on the basis of homogeneity; they had all undergone some prior investigations of their illness, and this was their first consultation in oncology; they all provided rich accounts relating to how they had experienced the consultation.
Patients' experiences of being given their diagnosis differed both between participants and within the same participant. Various defences seemed to be used in order to protect them from fully engaging with the knowledge they were given. Their accounts of what they wished to know in the consultation could be affected by a desire to protect themselves and/or family members from distress and by the practical need to know that may vary over time.
The complexity of patients' needs and preferences regarding information means that the doctor's role in communicating that information in a patient-centred way is difficult. The findings are discussed in relation to open awareness theory as to how the emotional context of the consultation process affects information needs. Doctors need strategies to elicit information from patients about their needs from the consultation. This needs to be done at the start of consultations and throughout investigations and treatment, as needs may change over time. Statement of contribution What is already known on this subject? Patients' desire to know information is sometimes tempered with by a desire to avoid distress to themselves. Patients do not always understand or make accurate sense of what they have been told. Receiving a diagnosis of cancer is distressing for patients. What does this study add? Doctors need strategies to elicit information from patients about their needs for each consultation. This needs to be done consistently throughout the patient journey as needs may change over time. Patients control what they do or do not do with information but do not openly share this with the doctor. Our interpretations of the interviews stray beyond the conscious accounts of the consultations and draw on (unconscious) absences that may also be of significance in making sense of overall experience. The complexity of patients' needs and preferences regarding information means that the doctors' role is very difficult. Patients have a right to know but not a duty to know their diagnosis and prognosis.
本文旨在探讨患者在首次肿瘤咨询中的体验。这项研究是一个更大的混合方法研究项目的一部分，旨在解决改善沟通和提高肿瘤咨询患者满意度的问题。
采用解释现象学分析方法来解释参与者在首次咨询中的体验意义。这是一种具体的方法，侧重于深入研究一小部分案例，以探讨个体如何理解类似的体验。这种方法保留了体验的复杂性和多样性。
在更大的研究中，对 36 名患者在肿瘤咨询后尽快进行半结构化访谈，以探讨他们的体验。本研究基于同质性选择了 5 个案例；他们都已经对自己的病情进行了一些前期检查，这是他们在肿瘤科的首次咨询；他们都提供了丰富的关于他们如何体验咨询的描述。
患者接受诊断的体验在参与者之间和同一参与者内部都有所不同。为了保护自己不受所提供知识的影响，似乎使用了各种防御机制。他们在咨询中希望了解的内容可能会受到保护自己和/或家人免受痛苦的愿望以及随时间变化的实际了解需求的影响。
患者对信息的需求和偏好的复杂性意味着医生以患者为中心的沟通信息的角色具有挑战性。研究结果结合开放意识理论，讨论了咨询过程的情感背景如何影响信息需求。医生需要策略从患者那里获取有关其从咨询开始到整个检查和治疗过程中需求的信息。随着时间的推移，需求可能会发生变化，因此需要在咨询开始时以及检查和治疗过程中不断地进行。
关于这个主题，目前已经知道了什么？
患者了解信息的愿望有时会受到避免自己痛苦的愿望的影响。
患者并不总是理解或准确理解他们被告知的内容。
患者被诊断出患有癌症会感到痛苦。
这项研究增加了什么？
医生需要从患者那里获取有关每次咨询需求的信息的策略。
这需要在患者的整个治疗过程中持续进行，因为需求可能会随时间而变化。
患者控制着他们是否处理或不处理信息，但不会与医生公开分享这一点。
我们对访谈的解释超越了咨询的有意识叙述，并借鉴了可能对理解整体体验也具有重要意义的（无意识）缺失。
患者对信息的需求和偏好的复杂性意味着医生的角色非常具有挑战性。
患者有权了解但没有义务了解他们的诊断和预后。
