Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney, Sydney, New South Wales, Australia.
Brisbane South Palliative Care Collaborative, Brisbane, Queensland, Australia.
BMJ Support Palliat Care. 2024 Jan 8;13(e3):e1390-e1397. doi: 10.1136/bmjspcare-2022-003580.
Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines.
Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview.
Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses.
The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.
大多数人表示，如果他们患有绝症，他们更愿意在家中接受治疗，如果可能的话，希望在那里去世。如果没有照顾者来协助进行持续的实际护理和症状管理，通常无法实现这一点。如果突破性症状不能及时得到治疗，症状可能会迅速恶化，导致患者遭受更多痛苦，并导致不必要的住院转院。许多照顾者表示，他们有动力但缺乏管理药物的知识，尤其是如果涉及皮下药物的准备和/或管理。本研究评估了教育和资源包 caring@home 对照顾者在家中管理皮下药物缓解症状的信心、知识和技能的影响。
接受过培训的护士向志愿照顾者介绍该包的使用方法。邀请照顾者填写一份 10 分钟的书面评估问卷，并考虑同意进行 30 分钟的半结构化电话访谈。
50 名照顾者返回了调查问卷，其中 12 名接受了访谈。大多数照顾者同意或强烈同意该包为他们提供了安全、自信地管理突破性症状所需的知识、技能和信心，进一步表示他们会向他人推荐该包。访谈分析揭示了三个主要主题：（1）犹豫和动机，愿意扩大照顾者的角色；（2）分层支持的重要性；（3）避免与护士的不必要接触。
临床服务可以使用该方案来增强照顾者的能力，帮助患者在家中得到照顾和临终关怀。
