Helping family caregivers of palliative care patients manage their roles: evaluation of a hospital based group education

虽然大多数人宁愿死在家里，但现实情况是，大约三分之二的人死在住院环境中，如姑息治疗病房。如果家庭照顾者做好了充分的准备，并在他们的角色中得到支持，那么家庭死亡的可能性更大。姑息治疗服务预计将支持家庭照顾者。然而，研究表明，许多家庭照顾者缺乏有效管理其角色所需的信息。他们在支持垂死的亲属时也容易遭受心理痛苦。护理人员表示希望获得结构化的信息，以便更好地为他们的角色做好准备，无论他们垂死的亲属是在医院，姑息治疗病房还是在家里。本计画的目的是发展和评估一个提供给家庭照顾者的教育计画，这些照顾者正在支持一位在住院环境中接受姑息治疗的亲属。该教育计划旨在帮助家庭护理人员管理他们的角色，并在适当的情况下为病人的家庭护理做好准备。希望参加该方案的家庭照顾者将更有能力，更好地准备和更了解他们的照顾作用。参加该计划的另一个好处是，家庭照顾者有机会与处境相似的其他人见面。每个教育方案将涉及大约六个家庭照顾者;它将在他们的亲属被接纳到姑息治疗单位后不久进行。该计划将持续两个小时（包括数据收集时间），并将由适当合格的卫生专业人员提供协助。将提供书面资源，护理人员将有机会与多学科小组的工作人员会面。在相关情况下，将安排安排进行磋商。该方案将在三个地点进行（两个在维多利亚，一个在西澳大利亚），并将进行全面评估。参加该计划的护理人员将被邀请通过完成几份旨在确定该计划有效性的问卷来提供反馈。这类团体教育方案以前没有得到严格的发展和测试。我们寻求解决这个问题，并希望证明我们可以积极影响家庭护理的经验。

While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while supporting their dying relative. Caregivers have expressed a desire for structured information to better prepare them for their role, whether their dying relative is in hospital, a palliative care unit or at home. The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an inpatient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient�s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their caregiving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves. Each education program will involve approximately six family caregivers; it will be conducted very soon after their relative has been admitted to the palliative care unit. The program will be of two hours duration (including time for data collection) and will be facilitated by a suitably qualified health professional. Written resources will be provided and caregivers will be given the opportunity to meet with staff from the multidisciplinary team. Referrals for scheduled consultations will be made where relevant. The program will be conducted in three sites (two in Victoria and one in Western Australia) and will be comprehensively evaluated. The caregivers who attend the program will be invited to provide feedback by completing several questionnaires designed to determine the effectiveness of the program. Group education programs of this kind have previously not been rigorously developed and tested. We seek to address this and hope to demonstrate that we can positively influence the family care giving experience.