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

在照料阶段和丧亲期间对家庭照顾者的支持是姑息关怀理念和实践的核心要素。大多数人表示倾向于在家中接受护理，但在接受姑息治疗的澳大利亚人中，只有约四分之一的人在家中死亡。家庭照顾者为在家中接受姑息治疗的患者提供了大部分支持，如果没有这一贡献，患者的福祉及其留在家中的能力将受到损害。许多研究已经承认，在家中照顾需要姑息治疗的亲戚的家庭照顾者会经历负面的心理、身体、社会和经济影响。家庭照顾者报告了在姑息治疗和丧亲过程中各种未得到满足的需求，尽管有医疗保健服务的投入，并被称为�Hidden Patients�。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，很难声称姑息关怀服务主动为家庭照顾者提供有效的有针对性的支持，而且在大多数情况下，家庭需求未得到满足的情况占了上风。家庭照顾者想要的信息能让他们为赡养垂死的亲人做好准备，关于如何提供病人安慰、实际护理需求以及将自己的心理负担降至最低的策略。我们的研究通过评估旨在提高家庭照顾者心理健康的家庭干预措施，具体回应了这些确定的需求。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.