Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.

中文翻译：

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为家庭护理人员开发电子卫生信息资源，以支持在爱尔兰岛上接受姑息治疗的人

许多接受姑息治疗的人希望在家中死亡。通常，家人或朋友的支持是确保实现这一愿望的关键。但是，护工报告说自己没有做好承担这一角色的准备。本文介绍了开发基于共识和证据的网站以提供核心信息，以帮助人们支持在爱尔兰岛上接受姑息治疗的人的过程。该项目包括三个阶段：（1）对系统评价的审查有助于确定核心信息需求；（2）内容是与由患者，护理人员和专业人员组成的虚拟参考小组（VRG）合作开发的；（3）项目团队中的主题专家与网络开发人员合作，整理协议内容，并确保其格式适合网站。然后，邀请VRG成员测试和批准该网站，然后再将其提供给公众。十九次系统评价确定了护理人员所需的核心信息的九个共识领域；姑息治疗的描述；病情的预后和治疗；药物和疼痛管理；个人护理; 专业设备；当地可用的支持服务；在紧急情况下该怎么办；营养; 并且，为照顾者提供支持。该信息已与VRG共享，并用于开发网站内容。我们与服务用户和专业人员合作，开发了一个基于证据的网站，以满足希望为朋友或亲戚提供姑息治疗的非专业护理人员的商定核心信息需求。