Miller Elizabeth M, Porter Joanne E, Peel Rebecca
School of Health, Federation University Australia - Gippsland Campus, Churchill, VIC, Australia.
SAGE Open Nurs. 2021 Sep 14;7:23779608211036284. doi: 10.1177/23779608211036284. eCollection 2021 Jan-Dec.
Palliative support services (generalist or specialist) can provide much-needed assistance to carers who are providing palliative and end-of-life care in their homes, but access to such services in regional and rural areas of Australia is poorly understood.
This study aimed to explore the role and lived experience of primary carers who are providing palliative and end-of-life care in the home in regional/rural Victoria, Australia.
Nine female participants, of whom six were bereaved between 7 and 20 months were interviewed using a semistructured interview technique. Each interview was audio-recorded, transcribed verbatim, and analyzed thematically.
Two themes emerged: "" which described the needs for multidisciplinary supports and "" which discussed daily tasks, relationships, mental and physical exhaustion, respite, isolation, medication management, and grief and loss. Findings show that regional/rural carers have an added burden of travel stress as well as feeling overwhelmed, isolated, and physically and emotionally exhausted. Carers would benefit from greater flexibility for short-term respite care. The engagement of specialist palliative care services assisted the participants to navigate the health care system.Some participants did not understand the value of palliative care, highlighting the need for general practitioners to conduct early conversations about this with their patients. Education is needed to build capacity within the primary palliative care workforce, confirming the importance of timely referrals to a specialist palliative care practitioner if pain or symptom control is not effectively managed.
Providing palliative and end-of-life care in the home is an exhausting and emotionally draining role for unpaid, primary carers. Multiple supports are needed to sustain primary carers, as they play an essential role in the primary health care system.
姑息支持服务（全科或专科）可以为在家中提供姑息和临终关怀的护理人员提供急需的帮助，但澳大利亚偏远和农村地区获得此类服务的情况却鲜为人知。
本研究旨在探讨在澳大利亚维多利亚州偏远/农村地区在家中提供姑息和临终关怀的主要护理人员的角色和生活经历。
采用半结构化访谈技术对9名女性参与者进行了访谈，其中6人在7至20个月内失去了亲人。每次访谈都进行了录音，逐字转录，并进行了主题分析。
出现了两个主题：“ ”描述了对多学科支持的需求，以及“ ”讨论了日常任务、人际关系、身心疲惫、喘息、孤立、药物管理以及悲伤和失落。研究结果表明，偏远/农村地区的护理人员除了感到不堪重负、孤立无援以及身心疲惫外，还承受着旅行压力带来的额外负担。护理人员将从短期喘息护理的更大灵活性中受益。专科姑息治疗服务的参与帮助参与者应对医疗保健系统。一些参与者不理解姑息治疗的价值，这凸显了全科医生需要尽早与患者进行相关谈话。需要开展教育以增强基层姑息治疗工作人员的能力，这证实了如果疼痛或症状控制未得到有效管理，及时转诊至专科姑息治疗从业者的重要性。
对于无偿的主要护理人员来说，在家中提供姑息和临终关怀是一项令人疲惫且情感耗竭的工作。需要多种支持来维持主要护理人员，因为他们在初级卫生保健系统中发挥着至关重要的作用。
