PDF(Pubmed)
Abstract：
BACKGROUND: Improving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement.
METHODS: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.
RESULTS: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.
CONCLUSIONS: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.
METHODS: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.
RESULTS: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.
CONCLUSIONS: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.
摘要：
背景：改善痴呆症患者的姑息治疗和临终关怀在全球范围内越来越优先。这项研究旨在整合痴呆症患者和护理人员临终关怀的多种观点，确定需要改进的临床相关领域。
方法：混合方法研究涉及调查，采访,和两个参与者组的研讨会:医疗保健专业人员和护理人员(向家庭成员或朋友提供护理和支持的个人)。邀请医疗保健专业人员完成澳大利亚医疗保健安全与质量委员会的在线改编版本，临终关怀工具包：临床医生调查问题。照顾者完成了一份纸质或在线改编版本的非正式照顾者的意见-服务评估（简称）（VOICES-SF）问卷。面试时间表是半结构化的，研讨会遵循共同设计格式。研究结果使用编织方法进行叙述整合。
结果：我们可以在五个方面改善对痴呆症患者临终时的护理，确定：1）及时认识到生命的终结；2）关于姑息治疗和生命终结的对话；3）对痴呆症患者和护理人员的信息和支持；4）以个人和护理人员为中心的护理；5）获得质量，协调护理。
结论：我们可以在多个领域改善痴呆症患者的临终关怀质量。研究结果表明，与痴呆症患者一起生活和照顾痴呆症患者的异质性和挑战性经历需要多学科，临终关怀的多方面方法。确定的解决方案，包括护理协调，可以指导当地为痴呆症患者开发共同设计的临终关怀模式。
方法：混合方法研究涉及调查，采访,和两个参与者组的研讨会:医疗保健专业人员和护理人员(向家庭成员或朋友提供护理和支持的个人)。邀请医疗保健专业人员完成澳大利亚医疗保健安全与质量委员会的在线改编版本，临终关怀工具包：临床医生调查问题。照顾者完成了一份纸质或在线改编版本的非正式照顾者的意见-服务评估（简称）（VOICES-SF）问卷。面试时间表是半结构化的，研讨会遵循共同设计格式。研究结果使用编织方法进行叙述整合。
结果：我们可以在五个方面改善对痴呆症患者临终时的护理，确定：1）及时认识到生命的终结；2）关于姑息治疗和生命终结的对话；3）对痴呆症患者和护理人员的信息和支持；4）以个人和护理人员为中心的护理；5）获得质量，协调护理。
结论：我们可以在多个领域改善痴呆症患者的临终关怀质量。研究结果表明，与痴呆症患者一起生活和照顾痴呆症患者的异质性和挑战性经历需要多学科，临终关怀的多方面方法。确定的解决方案，包括护理协调，可以指导当地为痴呆症患者开发共同设计的临终关怀模式。
