Improving the psychological wellbeing of family caregivers of home based palliative care patients: A randomised controll

在提供照护阶段和丧亲之痛期间对家庭照护者的支持是姑息治疗理念和实践的核心要素。大多数人报告说，他们更愿意在家中接受护理，但在接受姑息治疗服务的澳大利亚人中，只有大约四分之一的人在家中死亡。家庭照护者为在家接受姑息治疗的患者提供了大量支持，如果没有这种贡献，患者的福祉和他们留在家中的能力将受到损害。许多研究都承认，在家中照顾需要姑息治疗的亲属的家庭照顾者所经历的负面心理、身体、社会和经济影响。尽管有卫生保健服务部门的投入，但在整个姑息治疗和丧亲过程中，家庭照顾者报告了各种未满足的需求，并被称为“隐藏的病人”。对家庭照顾者的支持往往是由危机驱动的。农村地区的资源问题增加了提供以家庭为中心的最佳支助的挑战。因此，很难声称姑息治疗服务主动地为家庭照顾者提供有效的有针对性的支持，并且在大多数情况下，未满足需求的家庭情况普遍存在。家庭照护者希望获得的信息能够帮助他们做好准备，了解如何为临终亲人提供支持，如何为病人提供安慰，如何提供实际的照护需求，以及如何将自己的心理负担降到最低。我们的研究通过评估以家庭为基础的干预来特别回应这些确定的需求，旨在提高家庭照顾者的心理健康。家庭照顾者将接受姑息治疗护士的两次家访、书面资源和电话支持。将与当地姑息治疗服务机构合作制定一项护理计划。

Support for family caregivers during the care giving phase and into bereavement is a core element of palliative care philosophy and practice. The majority of people report a preference to be cared for at home yet only about a quarter of Australians receiving palliative care services have a home death. Family caregivers provide the bulk of support to patients receiving palliative care at home and without this contribution the well-being of patients and their capacity to remain at home would be compromised. Many research studies have acknowledged the negative psychological, physical, social and financial impact experienced by family caregivers who care for a relative requiring palliative care at home. Family caregivers report a variety of unmet needs throughout the palliative care and bereavement process, despite input from health care services and have been referred to as �hidden patients�. Support for family caregivers is often crisis driven. Resource issues in rural areas add to the challenges of providing optimal family centred support. Hence, it is difficult to claim that palliative care services pro-actively provide effective targeted support for family caregivers and for the most part, family situations with unmet needs prevail. Family caregivers want information that prepares them for what is involved in supporting a dying relative, on how to provide patient comfort, practical care needs and strategies to minimise their own psychological burden. Our study specifically responds to these identified needs by evaluating a home based intervention that aims to enhance the psychological well-being of family caregivers. Family caregivers will receive two home visits from a palliative care nurse, written resources and phone support. A care plan will be developed in partnership with the local palliative care service.