Albury Wodonga Health, Albury Wodonga, Vic., Australia.
La Trobe University, Wodonga, Vic, Australia.
Health Soc Care Community. 2019 Jul;27(4):926-935. doi: 10.1111/hsc.12710. Epub 2019 Feb 27.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
绝症患者的护理越来越从急症环境转移到社区。因此，照顾者的角色变得越来越重要和复杂。人们已经充分认识到准备和支持家庭照顾者的重要性；然而，对于农村对准备工作的影响以及准备工作如何塑造包括丧亲之痛在内的照顾连续性知之甚少。本研究于 2017 年进行，旨在探讨丧亲的农村家庭姑息治疗照顾者如何描述他们对照顾的准备情况。采用解释现象学分析方法，对 4 名女性和 6 名男性（N=10，年龄 55-87 岁）进行半结构式访谈。参与者是通过自愿参与澳大利亚地区专科姑息治疗咨询服务而招募的。照顾者的经历说明了他们对角色缺乏准备，主要有四个主题：未知、战斗、空虚和美好。未知与缺乏知识和技能、恐惧、预后沟通、排斥、情绪困扰和悲伤经历有关。战斗以多种方式经历：内在（存在于头脑中）、通过角色冲突和身份；与患者、临床医生和家人之间的人际；以及系统地（针对健康、财务和法律系统）。在照顾者的孤独、放弃角色、丧亲之痛以及感觉被服务提供者抛弃时，感到空虚。积极的体验，如被重视、被包容和与支持建立联系，以及促进更密切的关系和更深刻的意义，虽然不太频繁，但会暂时缓解负面方面的影响。本研究对政策和实践的启示集中在对照顾者的频繁、有目的和真诚的参与。鼓励服务和临床医生加强沟通实践，促进有意义的包容，解决获得服务的问题，并在放弃角色时提供支持。
