School of Nursing and Midwifery, Medical Biology Centre, Queen's University Belfast, Lisburn Road, Belfast, BT9 7BL, UK.
All Ireland Institute of Hospice and Palliative Care, Our Lady's Hospice and Care Services, Harold's Cross, Dublin 6, Ireland.
BMC Palliat Care. 2019 Aug 30;18(1):74. doi: 10.1186/s12904-019-0457-y.
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.
许多接受姑息治疗的人希望在家中离世。通常，家人或朋友的支持是实现这一愿望的关键。然而，照顾者报告说他们感到准备不足，无法承担这一角色。本文描述了开发一个共识和循证网站的过程，该网站旨在提供核心信息，帮助爱尔兰岛的人们为接受姑息治疗的人提供支持。
该项目包括三个阶段：（1）对系统评价进行审查，有助于确定核心信息需求；（2）与一个由患者、照顾者和专业人员组成的虚拟参考小组（VRG）合作开发内容；（3）项目团队内的主题专家与网页开发人员合作，精简商定的内容，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，然后再向公众开放。
19 项系统评价确定了照顾者所需的九个核心信息共识领域；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；专科设备；当地可用的支持服务；紧急情况下该做什么；营养；以及照顾者的支持。这些信息与 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，满足了希望为朋友或亲属提供姑息治疗的非专业照顾者的商定核心信息需求。
