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加强对晚期癌症患者父母的支持性护理:一本自主学习教育手册的编制

Enhancing the supportive care of parents with advanced cancer: development of a self-directed educational manual.

作者信息

Turner Jane, Clavarino Alexandra, Yates Patsy, Hargraves Maryanne, Connors Veronica, Hausmann Sue

机构信息

Department of Psychiatry, University of Queensland, K Floor, Mental Health Centre, Herston 4029, Australia.

出版信息

Eur J Cancer. 2008 Aug;44(12):1625-31. doi: 10.1016/j.ejca.2008.02.045. Epub 2008 Mar 28.

Abstract

Diagnosing and treating young patients with cancer can be stressful for health professionals; however, when the prognosis is poor and the patient has dependent children, even experienced clinicians can feel distressed and helpless. Parents with advanced cancer commonly express anxiety about the impact of the disease on their children, yet health professionals often feel unable to respond constructively because of lack of training, or concern that discussion about such difficult issues will compound parental distress. In response to this problem, an educational manual has been devised to assist oncology staff to better understand the emotional impact of parental advanced cancer, encompassing information about specific reactions of children, including strategies to help children and families cope. This paper describes the development and content of the resource which provides clinically relevant information and evidence-based recommendations to guide supportive care. The manual differs from the more traditional didactic resources in that it examines the very personal impact for professionals working with parents with advanced disease, encouraging reflection and engages the reader in clinical exercises which encourage active learning and application of knowledge into authentic clinical contexts. Although the manual is designed primarily for nurses, it is clear that much of the information is relevant for all health professionals involved in the care of parents with advanced cancer.

摘要

对医疗专业人员来说,诊断和治疗患有癌症的年轻患者可能会带来压力;然而,当预后不佳且患者有未成年子女时,即使是经验丰富的临床医生也会感到痛苦和无助。患有晚期癌症的父母通常会对疾病对其子女的影响表示焦虑,但医疗专业人员常常因缺乏培训,或者担心讨论此类难题会加重父母的痛苦,而觉得无法给出建设性的回应。针对这一问题,已设计出一本教育手册,以帮助肿瘤学工作人员更好地理解父母晚期癌症带来的情感影响,其中包含有关儿童具体反应的信息,包括帮助儿童和家庭应对的策略。本文介绍了该资源的开发过程和内容,它提供了与临床相关的信息和基于证据的建议,以指导支持性护理。该手册与更传统的说教式资源不同,它审视了与患有晚期疾病的父母打交道的专业人员所受到的个人影响,鼓励进行反思,并让读者参与临床练习,这些练习鼓励积极学习并将知识应用于真实的临床情境中。虽然该手册主要是为护士设计的,但很明显,其中的许多信息对所有参与护理患有晚期癌症父母的医疗专业人员都适用。

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