Data_Sheet_1_Staff perspectives on end-of-life care for people living with dementia in residential aged care homes: qualitative study.docx

IntroductionPeople living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences.
ObjectiveTo describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families.
MethodsFocus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis.
ResultsFifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours).
DiscussionAged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

引言：养老机构内的痴呆症患者可从姑息照护（Palliative Care）方案中获益，但并非所有患者均需接受专科姑息照护。具备完善培训与支持体系的全科老年照护从业人员，具备提供绝大多数此类照护服务的充足条件，但目前对其从业体验的了解仍十分有限。
研究目标：本研究旨在描述从业人员对于为养老机构内痴呆症患者及其家属提供优质临终照护（End-of-Life Care）的看法。
研究方法：本研究对澳大利亚养老机构内照料痴呆症临终患者的管理人员与一线照护人员开展焦点小组访谈（Focus Groups）与半结构化访谈（Semi-structured Interviews）。参与调研的养老机构采用先全面抽样、后滚雪球抽样的复合抽样策略。所有访谈转录文本均采用反思性主题分析（Reflexive Thematic Analysis）方法进行编码分析。
研究结果：本研究共开展15次半结构化访谈与6场焦点小组访谈，累计纳入来自澳大利亚两个州14家养老机构的56名参与者。最终提炼出五大核心主题：其一，以照护对象为中心（打造家园式而非医院式的照护环境、精准认知个体需求、采用个案管理模式）；其二，明确照护目标以满足患者意愿（主动开启沟通对话、提升死亡认知素养、避免不必要的住院治疗）；其三，集体行动倡议（优化机构人员配置、识别照护对象健康恶化情况并及时上报、畅通沟通渠道并对接全科医生（General Practitioners，GP）、规范药物管理、提供社会心理支持）；其四，教育培训赋能从业人员（完善治理与指导机制、指导新晋从业人员、重视从业人员自我关怀）；其五，促进家属接纳与配合（明确照护预期、协同开展照护、保障家属随时探视权限）。
讨论：养老机构照护从业人员始终致力于为痴呆症患者提供以患者为中心的姑息照护与临终照护，认可每一位照护对象的固有价值，无论其健康衰退程度如何。一线照护人员与管理人员均认为，预先照护计划、以多学科团队（Multidisciplinary Team，MDT）形式协同开展工作、获取针对性的姑息照护与临终照护教育培训，以及联动家属参与照护，是养老机构内提供优质照护服务的核心工作重点。