Newell Rob, Ziegler Lucy, Stafford Nick, Lewin Robert J
School of Health Studies, University of Bradford, Bradford, UK.
Ann R Coll Surg Engl. 2004 Nov;86(6):407-10. doi: 10.1308/147870804722.
To describe the common themes in the experiences and expressed information needs of patients undergoing head and neck surgery. Summary background data : Patients who suffer head and neck cancers and undergo surgery often report considerable psychological distress and impaired social functioning. To optimise survival, the decision about what treatment option to follow is often made quickly, with little support in terms of counselling or the provision of information. There is inadequate previous work exploring the content and delivery of information required by patients at this time.
Participants included patients who had undergone surgery for head or neck cancer (n=29) and their immediate relatives who were present at the initial consultation with the surgeon (n=13). Patients were recruited from out-patient departments in two hospitals in the north of England. All interviews were conducted in participants' homes and were guided by a semistructured interview schedule devised both from literature and a pilot study.
Whilst most participants felt well informed about the surgical procedure they were undergoing, many reported feeling unprepared for the long-term lifestyle changes that occurred. Information, support and advice throughout the 3-6 months postoperative period was reported to be inadequate. The majority of participants did not ask any questions and did not perceive there was a choice regarding treatment. Individuals who wanted to take an active role in decision-making reported difficulties accessing information to enable them to do so.
The findings of this study emphasise the need for individualised information provision defined not exclusively by the surgical procedure.
描述接受头颈外科手术患者的经历及所表达的信息需求中的共同主题。总结背景资料：患有头颈癌并接受手术的患者常报告有相当大的心理困扰及社会功能受损。为优化生存率，关于采用何种治疗方案的决策通常很快做出，在咨询或提供信息方面几乎没有支持。此前对于此时患者所需信息的内容及提供方式的研究不足。
参与者包括接受过头颈癌手术的患者（n = 29）及其在初次与外科医生会诊时在场的直系亲属（n = 13）。患者从英格兰北部两家医院的门诊招募。所有访谈均在参与者家中进行，并由根据文献和一项试点研究设计的半结构化访谈提纲指导。
虽然大多数参与者觉得对他们正在接受的手术程序了解充分，但许多人报告称对随之而来的长期生活方式改变毫无准备。据报告，术后3至6个月期间的信息、支持和建议不足。大多数参与者没有提出任何问题，也不认为在治疗方面有选择。那些希望在决策中发挥积极作用的人报告说难以获取使其能够这样做的信息。
本研究结果强调需要提供不仅由手术程序定义的个性化信息。
