Cunningham Centre for Palliative Care, Calvary Health Care Sydney, Kogarah, NSW 2217, Australia.
J Neurooncol. 2011 Aug;104(1):315-22. doi: 10.1007/s11060-010-0495-z. Epub 2010 Dec 14.
This study sought the views of patients and their caregivers on their experience of being diagnosed with high grade glioma. Purposive sampling was used to recruit 19 patients and 21 caregivers from the medical oncology unit of a tertiary hospital. A semi-structured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data was analysed based on Grounded Theory and using the constant comparison method. This paper focuses on patient and carer perceptions of the initial communication about the diagnosis of high grade glioma and its prognosis. Themes identified included: (a) shock at hearing the diagnosis; (b) trying to understand and process prognostic information when still in shock; (c) the perception of hope being taken away; (d) individualizing prognostic information; and (e) clinicians' lack of communication skills. This study shows that the first communication of prognosis to patients with high grade glioma and their caregivers requires careful negotiation. It illustrates the inability of individuals to process detailed prognostic information when in a state of initial shock and distress. The importance of balancing honesty with hope in the communication of a poor prognosis is highlighted. We recommend that clinicians seek patient preferences for the amount and type of information they require and that prognostic information be individualized. Detailed discussions of prognosis should only take place with senior medical staff, or advanced trainees who have demonstrated acceptable communication skills.
本研究旨在了解患者及其照顾者在被诊断为高级别胶质瘤时的体验。采用目的性抽样法，从一家三级医院的肿瘤内科招募了 19 名患者和 21 名照顾者。采用半结构式面对面访谈的方式进行了访谈。访谈进行了录音，并逐字转录。根据扎根理论和恒定性比较法进行了数据分析。本文重点关注患者和照顾者对高级别胶质瘤初始诊断及其预后的沟通的看法。确定的主题包括：(a) 听到诊断结果时感到震惊；(b) 在震惊中努力理解和处理预后信息；(c) 感到希望被剥夺；(d) 个体化预后信息；以及 (e) 临床医生缺乏沟通技巧。本研究表明，向高级别胶质瘤患者及其照顾者传达预后的首次沟通需要谨慎协商。它说明了个人在初始震惊和痛苦状态下无法处理详细的预后信息。强调了在传达不良预后时，平衡诚实与希望的重要性。我们建议临床医生了解患者对所需信息量和类型的偏好，并对预后信息进行个体化处理。详细讨论预后的情况仅应在具有高级别医学知识的医疗人员或具有可接受沟通技巧的高级培训生参与下进行。
